Isn’t engineering just a boy’s game of math & science? #tbt #SWE

Short Answer: No.

The rest of the story:

A few weeks ago, I found a gem of an email in my inbox:

Dear Andrea,

We are TA and DD (middle school girls in the US) and we both love engineering and art. We both play string instruments.

For our Language Arts class, my class had read and analyzed an article on Stamps Scholars. We decided to see if we will be able to contact one of you, looked through some of the Featured Scholars for people who interested us, and found your name. We were surprised that you were one of the only women on that page who was enjoyed engineering. We also liked and  support the way you brought engineering to undeveloped areas. We also saw how you enjoyed art-related subjects.

What made you go towards engineering when you are more art focused? For example, you play the violin and sing in the Women’s Glee Club and enjoy writing, hand-crafting jewelry and cooking but you decided to major in engineering. Also, why did you decide to learn the Polish language and study literature when you are more focused on engineering? Engineering is not related to literature and languages at all.

If you have any advice for us, please contact us. Thank you for your time,

TA & DD

These two perceptive middle schoolers are correct that my interest in engineering doesn’t seem to fit society’s picture of art, music, cooking and other ‘girly’ things.  (Through my experiences in Society of Women Engineers, I’ve entered into the discussion about what is or isn’t ‘girly’ many a time. I’ll hold back on that topic for now.)

Engineering can seem quite different from the humanities, but if I’ve taken anything away from my experience as the Roger M. Jones Fellow, it is that the humanities maintain their importance in the digital age.  This is something about which I feel very strongly. It has influenced my path that includes engineering and bioethics as a foundation for studies in medicine, and I am happy to discuss this with anyone curious enough to join me for a cup of tea (or virtual chat).

Dear TA & DD,

Thank you for your kind note– it is pleasure to meet you.

My response is a bit long, but I thought your thoughtfully composed questions required a thorough answer.

As you’ve seen from the Stamps page, I majored in Biomedical Engineering (BME) and minored in Music, which means that I took most of my classes in BME and fewer classes in Music. However, as you’ve also noted, I really enjoy the Fine Arts. 🙂

Music?

Although Engineering and Music seem quite different, there are a number of connections. For example, since you play stringed instruments you probably know how to tune. If we had to choose Engineering or Music, most people might say that tuning is more relevant to Music, but actually it is also very relevant to Engineering. Not convinced? 🙂 You might enjoy this Wikipedia article about the physics of violins.

Moral of the story: you might feel like you have to choose Engineering or Music, but you don’t! Math and music use some of the same brain function, so there are many people that feel just like you do. Over 1/3 of the members University of Michigan Marching Band study engineering, and a lot of the members of the youth symphony that I played in when I was in middle & high school went on to study engineering, too.

I chose to study Engineering because I love how versatile it is. Instead of thinking about engineering in terms of what people can do or make (ie: Aerospace Engineers work at Boeing and make airplanes; Computer Science Engineers work for Microsoft and design software) I like to think of it more broadly. In other words, I see engineers as creative problem solvers who make the world a better place. The problem solving skills that you learn in engineering can be used in many ways. For example, I am using my BME problem solving skills to study Bioethics. In Bioethics we look at tough questions in healthcare like:

– If we have 100 hospital beds and 125 people that need treatment, what is the best way to give people the care they need?

– You and I both seem to feel very alive when we participate in the arts. How do we define ‘being alive’? How do we define being human? How does medicine fit into the picture?

– If there were a new medication that has 50% chance of curing someone’s cancer and a 50% chance of making the cancer a lot worse, should patients receive the medication? Can doctors / law-makiers stop them from taking the medication if they want to take it?

– If a treatment works really well in the US and there are a lot of people in developing countries that need that treatment, how do we help those people get the treatment they need?

This last question was really important in my BME design classes– keep reading to see what I mean. 🙂

Language, Literature, & Culture?

I wanted to study Polish because I have Polish roots.  When my family and I would visit our relatives in Poland, it was nice that they could speak English, but I really wanted to try to speak with them in their native language, too– there are some things that just do not translate very well.  From a practical standpoint, learning another language helps engineers communicate with customers / companies that do most of their work in another country. From a more nuanced perspective, studying languages / literature helps you understand more about the culture in which it was written. For engineers to be successful, they need to not only consider technical aspects but also the cultural aspects– especially those that do not ‘translate’ well.

For example, for my capstone engineering project at UM, I worked on a student team to design and prototype a low-cost hearing screening device for newborns in South Africa.

Why bother? Hearing loss is one of the most common problems that children are born with. If left untreated, this can cause language development delays which lead to lower educational and employment levels in adulthood. Studies have shown, however, that deaf children who begin treatment before 6 months of age can reach the same academic level as their peers by the time they enter grade school.  A parent might notice that their child is deaf around the age of 2 (just by watching them), but that’s ‘too late’ to avoid these developmental delays. In order to catch it before 6 months, you have to use a hearing screening device.

Although it might seem like the major task was making a device for $$ when it normally sells for $$$$$, my team and I realized that we also needed to know a lot about South African culture to ensure that our device would work for patients we desired to help.  Questions that we had to ask ourselves included:

– A tech operates the hearing screening device in the US– who would be responsible for operating this device in South Africa? What training do they receive?

– A lot of people in the US have smart phones. If we made our device work with a smart phone, how many people in South Africa have smart phones? How do they charge their phone (if they are not connected to the electrical grid)?

– If you identify that a child is hearing-impaired in the US, there are a number of resources available for treating them. What resources exist in South Africa? How much do they cost? Are they easy to access?

– What is the ‘deaf culture’ like in South Africa? Are children likely to be teased (or otherwise discriminated against) if they are diagnosed as deaf? How do parents respond when their child is diagnosed as deaf?

In looking at questions like this, it might be a little bit easier to see how your language / literature / culture studies are also important for engineering. 😉

Hope this helps answers your questions! I wish you the best with your continued education.

Cheers,

Andrea

 

Featured photo: Representing SWE at UM Engineering Welcome Day 2013. Photo courtesy of Joseph Xu with UM Engineering.

Let the dissertation work begin!

Hi folks,

May is the exam season at KCL, but thank goodness that’s an experience that I can say I’ve tried once and don’t have to repeat.  Instead of locking myself away in the library to study for exams, I’ve locked myself away in the library to write papers. 🙂

D-day is May 14, but in the mean time, I’m also gearing up for full time dissertation work. Today I conducted my very first interview and I’m happy to report: so far, so good! The wifi even lasted for an entire hour!

For those that are interested, I’ve included a segment from (the revised edition of) my proposal that I submitted in February at the bottom of this post. Be forewarned, this has a lot of jargon in it! As I continue to work on my dissertation (due in September) I foresee myself writing some blog posts and will do my best to break it down like I did with my first mtDNA update.

Cheers,

Andrea

Reproductive Counseling (RC) for Adolescents Diagnosed with von Hippel-Lindau

Current methods of genetic testing are most prescriptive for highly penetrant, monogenic disorders such as Huntington’s Disease and Neurofibromatosis (Cecil et al. 2012, p 184-187).  Although each monogenic disease is rare, it is estimated that the global prevalence for all monogenic diseases is 1/100 births (WHO.int 2015).  Since symptoms of some of these monogenic diseases can be quite severe or even lethal, receiving such a diagnosis often influences a person’s reproductive decision-making process.

I would like to focus my research on von Hippel-Lindau (VHL) disease, a lesser publicized monogenic disease caused by mutation in the VHL tumor suppressing gene located on chromosome 3p26-25.  VHL follows a pattern of autosomal dominant inheritance, but approximately 20% of cases occur via a de novo mutation (Frantzen et al. 2012).  It often manifests itself first via tumors on the retina, but may also affect the kidneys, adrenal glands, and central nervous system (Frantzen et al. 2012). The most recent calculation of a VHL patient’s life expectancy was approximately 50 years, but early diagnosis, vigilant surveillance, and proactive management of tumors help reduce the morbidity and mortality of affected individuals (Orpha.net 2015).

Although patients with monogenic disorders such as VHL have more reproduction options than in any previous decade, there are many important ethical considerations that must be considered in navigating these family planning decisions.  These ethical considerations are perhaps most exaggerated for adolescents (age 12-17 years) diagnosed with a de novo mutation. Understanding that none of the patient’s family have the disease and that discussions regarding family planning are often regarded as private and sensitive:

  • How do VHL patients perceive their involvement in RC that they receive as adolescents?
    • Why do adolescents have the counselors that they have?
    • Who is / should be initiating RC sessions with adolescent patients?
    • When considering RC for adolescents, how is the de novo case unique?
  • How are bioethical considerations incorporated into RC sessions with adolescents?
    • What understanding do VHL patients have of the ethical considerations relevant to reproductive options?
    • Do patients perceive themselves to be cognitively and emotionally mature enough as adolescents to understand the technical details / risks / ethical considerations being discussed in RC sessions?
  • To what extent do patients perceive the RC received as adolescents as beneficial for making reproductive decisions?
    • How do patients’ social identities (ie: cultural, religious affiliations) impact their interpretation of the RC they receive?
    • Based on the research, should patients receive RC as adolescents? Why or why not?

 

**Note: these are my revised questions which reflect a slight shift in focus from when I originally submitted my proposal. You’ll notice that I only have one de novo specific question. After 2 months of recruiting de novo participants, I still did not have enough volunteers. Consequently, this past week, I modified the requirements so other people that inherited VHL could participate. I’m still ironing out some of the changes to my research plan, but am quite happy with my current questions. They emphasize the adolescence (more than de novo / inherited) qualifier and thus target the area that I am most interested in investigating.

 

Literature exists on prenatal genetic counselling for pregnant adolescents (Griswald et al. 2011; Peters-Brown and Fry-Mehltretter 1996); the influence of a patient’s cultural (Weil 2001) or religious (Evans 2010) identity on his decision-making process; the parental response to a child’s diagnosis with a rare disease (Picci et al. 2013); and attitudes that VHL patients have toward modern reproductive technologies (Lammens et al. 2009). However, to my knowledge nothing exists at the cross-roads of these topics. Recognizing this knowledge gap in published literature, I would like to study the various forms of counselling that adolescents receive when they have been diagnosed with VHL because I want to find out how these adolescents navigate reproductive decisions in order to understand how to better support their decision making process.

Although my research objective focuses on adolescents, I have specifically chosen to speak with adult patients because adults will have had more time to process what it means to live with VHL, what reproduction entails, and how a VHL diagnosis may influence their reproductive decisions.  This extended processing time will likely make them more willing and potentially less sensitized to discussing these topics. Recognizing that this does not eliminate the risk of inducing psychological stress or anxiety, I will provide participants with supportive resources through the VHL Alliance (VHL Alliance 2015) and clearly state that participants have rights to withdraw from the study via the Consent Form.

I have not specified an age range for these adult participants because reproductive decisions are deeply personal, associated more closely with an individual’s personal experience than with his / her age.  I do not want to assume—based solely on his age—that a qualifying adult is (not) prepared to reflect on his experience as an adolescent.  Participation is voluntary and will hopefully be guided by a patient’s personal comfort level in discussing these topics openly.  Furthermore, a wider variety in age may provide me with a better ability to understand how reproductive decisions and / or counselling services shift with a patient’s age.

References

Cecil, R L, Goldman, L and Schafer, A I, 2012, Goldman’s Cecil Medicine. Philadelphia: Elsevier/Saunders. Print. pp. 184-187.

Evans, J H, 2010, Contested reproduction: Genetic technologies, religion, and public debate, University of Chicago Press.

Frantzen, C, Links, T and Giles, R 2012, ‘Von Hippel-Lindau Disease’. GeneReviews®.  [Internet]. Available at: http://www.ncbi.nlm.nih.gov/books/NBK1463  [Accessed 4 Feb. 2015].

Griswold, C M, Ashley, S S, Dixon, S D and Scott, J L, 2011, “Genetic counselors’ experiences with adolescent patients in prenatal genetic counseling”, Journal of genetic counseling, vol. 20, no. 2, pp. 178-191.

Lammens, C, Bleiker, E, Aaronson, N, Vriends, A, Ausems, M, Jansweijer, M, Wagner, A, Sijmons, R, van den Ouweland, A and van der Luijt, R, 2009, “Attitude towards pre-implantation genetic diagnosis for hereditary cancer”, Familial cancer, vol. 8, no. 4, pp. 457-464.

Orpha.net 2015. Orphanet: Von Hippel Lindau disease. [Internet]. Available at: http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=892.0 [Accessed 29 Jan. 2015].

Peters-Brown, T and Fry-Mehltretter, L, 1996, “Genetic counseling for pregnant adolescents”, Journal of genetic counseling, vol. 5, no. 4, pp. 155-168.

Picci, R L, Oliva, F, Trivelli, F, Carezana, C, Zuffranieri, M, Ostacoli, L, Furlan, P M & Lala, R, 2013, “Emotional Burden and Coping Strategies of Parents of Children with Rare Diseases”, Journal of Child and Family Studies, , pp. 1-9.

VHL Alliance, (2015). Getting Support – VHL Alliance. [online] Available at: http://www.vhl.org/wordpress/patients-caregivers/getting-support/ [Accessed 4 Feb. 2015].

WHO.int 2015. World Health Organization. “Genes and human disease: Monogenic Diseases.” [online] Available at: http://www.who.int/genomics/public/geneticdiseases/en/index2.html [Accessed 29 Jan. 2015].

Featured image: Internet photo inspired by the signs that students leave on the library computers when they take a break from studying.  Another favorite, akin to my Grandma’s To be Continued: Keep Calm, I’ll Return.

Holy Week – London Edition

Hello, dear Readers!

So much has happened since I’ve last written—I do hope you’ve been enoying your days as much as I have.  🙂

As to be expected when I’m living in London, Holy Week was a bit different this year. Since the dates usually coincided with my undergraduate exams, 2015 wasn’t the first year that I celebrated without my family.  But it was the first time that I’ve celebrate it in a foreign country. And it was made particularly special because I was joined by my boyfriend, Ben Brejle.

After Ben’s 8 time zone, 15 hour journey from Seattle, he requested a quick rest to see if he could ease his (literal) red eye. His tour of London began with a walk to Covent Garden… where I had to retrieve my boots, Birkenstocks, and coat from the Shoe Cobbler/Dry Cleaner.  One thing that I may have failed to mention in my ‘first impressions’ post is that Londoners where nice shoes. This may seem like a silly observation, but seriously—doesn’t matter whether you are walking with a brief case in the banking district, busking in the tube station, or sitting on the bridge with a coffee cup as a coin collector—you have solid shoes. Makes sense with all the walking they do!

With an itty-bitty flat and an itty-bitty wardrobe, I’ve tried my best to keep my shoe selection small and up to London standards.  My two favorite pairs are my lime green Birkenstocks (a birthday gift to myself during undergrad) and brown leather boots (this year’s Christmas gift from my parents).  Two days before Ben was set to arrive, I realized that the click in my boot heel was caused by a rock wedged in the hole that I had (unknowingly) worn probably caused by the miles of walking I did on cobblestone paths in Rome. Since shoe cobblers are pretty rare in my hometown, I was slightly irritated at the envisioned hassle that it would take to repair these. Good news though—since people have nice shoes here, cobblers (and dry cleaners) are almost as common as barbers. And since they have to the competition is strong, service is quick and prices are relatively inexpensive as far as London goes. Woo hoo!

Anyway, after a quick exchange at the cupboard of a store  we continued our walking tour from Covent Garden: The Royal Opera House, KCL’s Strand Campus, Twinings tea shop, the Royal Courts of Justice, KCL’s Maughan Library… all the way to St Etheldreda’s parish for Maundy Thursday (Holy Thursday) mass with a few minutes to spare.  Good thing Ben has a long stride!

 

Holy Thursday

On Holy Thursday, Catholics remember Jesus’ Last Supper and the Institution of the Eucharist.  Another special aspect of this service is the foot-washing ceremony, were we specifically recall Jesus’ exemplary teaching  of servant leadership.

 13 “You call me ‘Teacher’ and ‘Lord,’ and rightly so, for that is what I am. 14 Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet. 15 I have set you an example that you should do as I have done for you. (John 13:13-15)

From my experience, the foot-washing ceremony is the part that varies the most between parishes.  For example, growing up at St Mary Star of the Sea in Jackson, MI, 12 parishioners (representing the 12 apostles) would be asked ahead of time to have their feet washed on Holy Thursday.  They were selected to represent the many faces of our parish community: young, elderly, pregnant, newly widowed, recovering from a round of chemo, etc. The priest would take off the fancy outer vestments, and go around with a bowl, pitcher of water, and towel to wash the feet of these individuals seated wherever they were in the church.  As a kid, I was captivated by this ceremony, feeling I had won front row tickets to a special when when one of the 12 happened to be sitting pretty close to our family.

St Mary Student Parish (SMSP) in Ann Arbor had 4 or 5 priests who said ~8 masses each weekend, and the physical church, which is comparatively small for the amount of parishioners they have, is often standing room only on Holy Thursday since there is only 1 mass offered.  At SMSP all the priests participate in the foot washing ceremony and they invite everybody else forward as well.  It becomes a sort of pay it forward chain of foot washing. Even though there are multiple foot-washing stations, since everyone is involved, it takes a bit longer—say 5-6 pieces of music instead of 3-4 in Jackson.

With these two very different examples in mind, I was a bit alarmed when we walked into St Etheldreda’s church and the usher approached Ben to ask if he would like his feet washed. I was unaccustomed to this on the spot recruitment method, but within 60 seconds we were both seated in one of the 12 foot washing seats. I soon began regretting the decision to pick up my boots before mass—it is not particularly easy to hide anything (least of all a large box of boots) when you are seated on the high altar.

Apart from the mass being in Latin (something rather uncommon in the US after Vatican II in the 1960s) the rest of Holy Thursday proceeded rather typically. After mass we continued our walking tour to London Bridge and routed us by my favorite grocery store so we could purchase food before most of the shops closed for the Easter weekend.

 

Good Friday

Good Friday was a bit more unique.  At 12pm, we watched a passion play in Trafalgar Square, the same location where I participated in the city’s celebration of Diwali this fall. I am terrible at estimating crowds, but the article that I saw stated that we were among 20,000 at the noon performance and another 20,000 attended the one later that afternoon. Post-play we made our way through the various parks en route to the South Kensington borough at which point Ben was growing more and more skeptical of his ‘jetlag’ fatigue. Good thing the pharmacy was still open!

Still wanting to make the most of his time in London, he suggested an evening service at St Paul’s (Anglican) Cathedral under the condition that he might call it quits if he started feeling any worse. I had never been to St Paul’s, which Anglophiles may know from watching Prince Charles and Princess Diana’s wedding in 1981. This Anglican service was pretty similar to Catholic Good Friday services that I’ve been to in the past except that the (loooong) gospel reading was sung and thus, lasting about three times longer normal. And being in London, there were some might fine dress hats among the attendants.

A soft drizzle greeted us after the service at which point we decided it was a good time to make some dinner and hot tea to ease Ben’s developing cough. After he spiked a 103F fever I started prepping for the worst by reading the guidelines for ‘Accident and Emergency’ (the NHS’s version of our ER) whilst trying to quash the A&E horror stories that I remember surfacing during my Foundations of Social Science, Health, and Medicine course last year.

 

Holy Saturday

Thankfully Ben began to feel a lot better by Saturday which supported my plans for markets & museums during the day, a taste of London’s famed Indian food for dinner, and an evening on the 32nd floor of the Shard with live music and a smidge of dancing. 🙂 🙂

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Easter Sunday

On Easter morning, we gave South Kens another attempt with 10am mass at Brompton Oratory. In the States, Easter mass is usually a… full sensory experience.  Fresh lilies, incense, special music (and tons of it—many songs for prelude and postlude), starchy sun dresses, clip-on ties… Whether you look at it from a religious perspective or as a neutral third party, it is a BIG deal.

Not so much at this mass. There may have been one piece of prelude music. And after the children’s choir sang the Gloria in Latin, the 1st Reading, Psalm, 2nd Reading, Sequence, and Gospel were all read by the priest in quick succession.  Communion was organized in the ‘European’ way—no obvious queue until you reach the Communion rail. Shortly after the priest and other Eucharistic ministers began retreating to the tabernacle to store the excess consecrated hosts, crowds of people began developing on either side of the main pews. “Did all of those people manage to miss Communion?”  Nope, they’re just ready to get a seat for quickly approaching 11am Latin mass.  In and out, folks, in and out.

Post-mass we soaked up some Easter sunshine on our way through Hyde Park and took advantage of the photo opp that the flowering trees presented. We also made time for an afternoon tea before heading to the Barbican for James MacMillan’s St Luke Passion performed by the Britten Sinfonia. This was a brand new piece with a timing premier over Easter weekend. As a violinist, I felt the percussive use of the string orchestra was less than desirable, but Ben (trombonist) provided a more positive review.   We stayed for the post-concert discussion with MacMillan (composer & conductor) as well as 3 other academics with focus areas including both religion and music which satiated the more intellectual pleasure of listening to a musical performance… and gave me some great memories of Musicology at UM.  Kind of funny since that is where Ben and I first met. (We were the two engineers in that class that were also enthused about classical music haha.)

The walk– both in Hyde park during the afternoon and on the way back from the Barbican in the evening– provided a good opportunity for some reflection time of the last few days as well as the last few months. I’ve now been living in London for 8 months, but for the first time in a long time felt… like I was experiencing something quite new. I mean this in both the positive sense (Let’s see London from 32 floors up! And listen to a world premiere!) as well as not-so-positive (What lies at the core of my frustration with the rushed Easter mass?). As my elders like to remind me, this is life. And as I’ve discovered for myself, I would much rather ride out the high and low tide than breed disease in stagnant water.

Here’s a toast to the crazy days, the plain-ole-boring days, and the people that make experiencing either of those a wonderful adventure.

Cheers,

Andrea

Featured Image: Walking across Blackfriars Bridge, St Paul’s

Afternoon Tea (and then some)

My cousin Cecilia (Cici) and I were born just 4 days apart, and since 1992 we’ve managed to have a number of good adventures together. The last adventure included one of her college roommates, Hailey, as they took on London like champs. I mentioned that Matilda, Westminster Cathedral, and Cadogan Hall in my previous post; here are a few more of the highlights from their visit.

Afternoon tea the Vauxhall Tea House Theatre:

Definitely gave me memories of living in Martha Cook, the University of Michigan residence hall that enjoys Wednesday sit down dinners, Friday afternoon teas, and a number of other lovely traditions. 🙂  This tea, a pretty good representation of traditional British tea, featured black (vanilla) tea with brown sugar cubes and full cream with a 3 tiered cake stand:

– Bottom = finger sandwiches (tuna and coronation chicken)

– Middle = scones + on-site made  strawberry preserves + clotted cream (almost butter, but by calling it ‘cream’ you put on 25x more than would be acceptable for butter)

– Top = dessert. Sometimes little cakes, but this time we feasted on vanilla bean ice-cream and brownies that I’d gamble to say were even better than Zingerman’s.

We enjoyed this so much that Cecilia and I recreated the experience back at my flat on her last full day here. That version even featured a meat pie from Borough market. 🙂

 

Stonehenge / Old Sarum / Salisbury Cathedral

Since Cecilia was able to visit for a full week, we were able to explore London together and take a side trip. So many options to choose from! We settled on Stonehenge with our decision influenced by the fact that this was the Equinox. I had read about some pagan rituals that were supposed to occur at sunrise, but the logistics became exponentially more complicated and expensive when planning outside of regular public transportation hours. Instead, we enjoyed a morning train ride to Salisbury, and then caught the bus to arrive at Stonehenge just before noon.

This worked out quite well because we not only enjoyed the beautiful spring sunshine but also a dance performance (?) by a group of people in costumes. I agree with Cici’s guess: perhaps these were the pagans that overslept.

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After Stonehenge, we enjoyed walking around Old Sarum and then picnicing in the city of Salisbury before heading to Evensong at the Salisbury Cathedral.

Family

I also had the delightful surprise of receiving a message from one of our Polish cousins– he (L) and his girlfriend (M) were in London for the weekend! L had previously lived in London for a few weeks while taking English classes, but insisted that I should be the tour guide. No pressure haha.  This provided an excellent opportunity to try out some of ‘London’s best’ restaurants that I had been reading about, AND take a ride in a black cab. Another tick on the London bucketlist. 🙂

Our first choice was a tapas bar, but it didn’t take reservations and when we arrived (as to be expected on a Saturday night in London) it was literally overflowing with people. But sticking with good SWE event planning stragies, I had made a reservation (the last reservation at that time!) for a table at a well-reviewed restaurant called Antico down the street. Wowza was the food delicious! I feasted on a octopus / shallots / rocket greens (arugala) salad for my primo, a halibut steak (massive!) for my secundo, and a torte for dessert. The only downside was that (being a Saturday) they booked two rounds of guests, so as soon as our desserts were served the waitress began encouraging us to leave. Fine. Time for a walk across Tower Bridge, particularly beautiful at night. 🙂  My cousin is an architect, which made it even more interesting admiring London’s nighttime cityscape.

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These moments go so quickly! Seems like yesterday that I was moving in, but alas final exam papers are soon approaching. The more adventures that I take, the more and more convinced I become that life is better when shared. Thanks so much for indulging me with a visit, Cecilia!

Major photo credits to Cici. 🙂  I snapped a few of these, but again– twice as nice when shared! xx

Dearest Darlingest Momsie and Popsicle

Although there hasn’t been any confusion over rooming at Shiz, and I haven’t yet seen Wicked in London[1], this week did bring a lot of excitement with thoughts of Momsie, Popsicle, and other family things. 

Last Sunday (March 15) was Mothers’ Day in the UK. After I finished my slight panic that I had somehow missed the whole month of April I learned that, although marketed quite similarly, this “Mothering Sunday” [2] is not associated with the US version of the holiday.  The priest at St Etheldreda’s Parish cleared this up during his homily and also connected this to the 21st C rendition of giving special thanks to our earthly mums as well as Mary, Mother of Jesus.

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St Etheldreda’s Parish, the oldest Roman Catholic church in London. Read more about it at: http://www.stetheldreda.com

We happened upon the Latin mass (far more common here in London than it is back home in the US) complete with choir and string quartet. Music included Eberlin’s Missa brevis in a, Palestrina’s Laudate Dominum, and (holiday appropriate) Johann Michael Haydn’s Ave Maria. As my mom likes to say, this is what I imagine heaven will sound like. 🙂

On Wednesday evening, after heading to Westminster Cathedral for daily mass, my cousin and I realized we were again celebrating a special feast– St Joseph’s Day.  Although this might make us sound like rather clueless Catholics, this was actually a vigil feast for St Joseph whose feast day is celebrated on March 19. We were again accompanied by beautiful music (this time organ + all male choir) and this time reflected on the gift of dads.

Westminster Cathedral
Westminster Cathedral

Although the mass ran longer than anticipated, we still had enough time to make the English Chamber Orchestra concert at Cadogen Hall (where I attended Joshua Bell’s performance this fall). This opened with Beethoven’s Leonora, featured an Italian soloist (Gloria Campaner) on Schumann’s piano concerto, and closed with Mendelssohn’s Scottish symphony. I don’t know that I’ve ever had such an excellent view of the stage– I could trace the musician’s eye contact and even follow the music on the last stand of cellists. Such a treat!

Following along with the last stand of cellists :)
Following along with the last stand of cellists 🙂

I also had a few good reminders of the significance of grandparents in recent weeks:

(a) Pope Francis’ address when I was in Rome: “We continue our reflection on grandparents, considering the value and importance of their role in the family. I do so by placing myself in their shoes, because I too belong to this age group. When I was in the Philippines, the Filipino people greeted me saying “Lolo Kiko” — meaning Grandpa Francis — “Lolo Kiko”, they said! The first important thing to stress: it is true that society tends to discard us, but the Lord definitely does not!… (Continue reading at the Vatican website.)

(b) The recent Social Science, Health, and Medicine seminar lecture on “Grandparenting in Europe and the Health Impacts of Caring for Grandchildren” presented by KCL’s Professor Karen Glaser (who coincidentally has ties to University of Michigan!)  There were a number of really interesting (and quite nuanced) findings discussed. ie: Caring for grandchildren on a ‘part-time’ basis (~15 hr / wk) has positive effects for grandparents’ health and well-being. The research has the potential to shape policy for work /retirement / compensation plans for the ever-growing older population. Since I’m looking at this with younger eyes, I’m curious to see if this could impact decisions around maternity / paternity leave as well as suggested work hours for working mums and dads. (Read more on the Grandparents Plus website.)

(c) Letter writing with my own grandparents. 🙂

The Valentine letter I received. Included an interesting WSJ article about med schools. :)
The Valentine letter I received. Included an interesting WSJ article about med schools. 🙂

Sometimes I’m pretty dense, so with just these occurrences this post may not have developed like this. But alas, I also saw Matilda, a special West End treat that I’ve been saving for viewing with my cousin Cecilia and her housemate Hailey.  (So glad the rush tickets worked out– we were the last few in queue to receive the special £5 student rate!!)

Cici & Hailey
Cici & Hailey

I hadn’t refreshed myself on Matilda’s plot since I watched the movie and read the book in grade school, but even if I would have, the theatre version deviates a bit from this. For example opening number “Miracle” features the soloists in the children’s Chorus each singing how “my mummy says I’m a miracle / my daddy says I’m a special little guy” regardless of whether they are acting sweet as angels or throwing tantrums at the moment.  This is juxtaposed with Matilda’s mother, shown at the hospital inquiring why she has become 9 months “fat” and whether or not it can be fixed before her dancing competition that evening. The doctor has the ‘joy’ (responsibility) of informing her of the situation:

DOCTOR
You’re nine months pregnant!

MRS WORMWOOD
Antibiotics, or . . . Oh, my good Lord! What about the Bi-Annual International Amateur Salsa and Ballroom Dancing Championships?

DOCTOR
A baby, Mrs Wormwood. A child. The most precious gift the natural world can bestow upon us has been handed to you. A brand new human being! A life. A person. A wonderful new person is about to come into your life to bring love, and magic, and happiness, and wonder!

MRS WORMWOOD
Oh, bloody hell!

DOCTOR
Every life I bring into this world
Restores my faith in human kind.

Each newborn life a canvas yet unpainted,
This still, unbroken skin,
This uncorrupted mind.

Ev-er-y life is unbelievably unlikely.
The chances of existence almost infinitely small.

The most common thing in life is life . . .

And yet every single life,
Every new life
Is a miracle!
Miracle!

MRS WORMWOOD
This is the worst day of my life! [3]

The audience watched with wide-eyed silence. No nervous or obligatory laughter. In fact, the applause at the end of the scene (where Matilda first enters to sing that her parents say she is “a lousy little worm”, “a bore”, “a good case for population control”…) was even a little hesitant as if the mums & dads were questioning whether or not it was a good idea to bring their little tykes to the theatre.

One might argue that this is theatre at it’s best! Inviting the audience into the world on stage!

Perhaps. But it would also make an good topic for a Bioethics lecture or dissertation: how are topics relevant in bioethics (ie: reproduction, pregnancy, child-birth) represented in popular culture or fictional literature? How do these representations impact our understanding of bioethics in ‘real life’? Some suggest that the provide us with warnings (ie: when I mentioned the Island when thinking about Maternal Spindle Transfer.) But we also hear suggestions that we are rather un-impacted by these sources: ‘those are clearly science fiction’ or ‘creating a Gattaca-esque world is not on our radar’, etc.  I already have my final papers in motion for the rest of the year, but this might fuel some free-time reading.

ASB

PS: In Christian traditions, today is Palm Sunday– the beginning of Holy Week, the holiest time in the Church calendar. It’s admittedly an odd thought that I’ll be apart from my family during this time, but celebrating in London presents a unique opportunity beginning with sung mass this evening at St Mary’s in Chelsea. Furthermore, I feel incredibly blessed to be welcoming my boyfriend Ben Brelje to London on Maundy Thursday and then greeting my sister Gretchen and dear friend Joan Campau right after the Octave of Easter is finished.  Very much looking forward to playing hostess, but this also means that I’ll be taking a break from writing for a bit. To keep the blog going in the mean time, I’ll try to prep some exclusively picture posts from earlier adventures that I haven’t been able to publish yet.  So as Grandma Berkemeier taught us, to be continued… xx

Footnotes:

[1] One of my favorite musicals!  But since I’ve seen it before in the States, it isn’t as high on my list as other performances.

[2] If you’re unfamiliar with this 4th Sunday of Lent holiday like I was, you can read a quick history on Wikipedia.

[3] I removed some parts of the script for reading purposes. Feel free to check out the whole thing HERE.

Featured Image: Stumbled upon Geraldine Street on a chilly walk back from Vauxhall. This is a toast to the lovely Geraldines in my life: Grandma (Geri) Gaydos as well as the coolest kid sister (Gigi) anyone could ask for. 🙂 Love you both!

Roma, Italia

Last week I had the incredible opportunity to participate in a medical ethics conference hosted by University of Notre Dame Center for Ethics and Culture at their Rome campus. As you may recall, this is the second year that I have been able to attend this medical ethics conference.  I had a bit of deja vu returning to the conference that helped fuel my desire to study bioethics, and more broadly, healthcare from the perspective of the humanities. To be fair though, this had a much different feel since we were just a block away from the Colosseum. 😉

I was impressed with how far I have progressed in my understanding of medical ethics in a year’s time.  Don’t misunderstand this as me thinking I’ve got it all figured out. Far from it! But I much better understood the language of this field and have become a bit more comfortable making bioethical arguments.  I guess my studying is paying off. 😉

I could write a book about what I have taken away from the conference discussions and then fill a few other volumes about tasting delicious Italian food… (click for enlargements + captions)

 

 

…strolling through beautiful museums, piazzas, and villas…

 

…standing in awe as a pilgrim in Rome (and Vatican City)…

 

…but I might have to drop out of my master’s program in order to make time for that. Instead, I present to you a snapshot at the intersection: is spirituality relevant to healthcare, medicine, and the understanding of bioethics?

This sends me back a few weeks ago when I was invited to speak to KCL’s Life Society about palliative care. From their website:

“We exist because universities are important spaces for the exploration of ideas and opinions, and it is important that the Pro-Life voice is heard on campus. Our message is a positive one, it is not about shaming or blaming, it is about discovering the beauty of human life, and protecting it.”

To be honest with you, I was pretty freaked out: why are you asking me?  How am I qualified to speak? To which the student in Life Society replied rather straightfowardly: You study bioethics right?  And you’re going into medicine? Seems like you would have a better idea about the topic than any of us!

It is amazing how much you can learn when you have to ‘teach’. I didn’t just want to speak on my own authority since, despite her encouragement, I honestly didn’t think I had much authority at all. In search of good reference material, I consulted a voice for whom I have profound respect, Ed Pellegrino, whose name I was introduced to little better than a year ago and whose literature continues to be a source of guidance in my study of bioethics.

Though I wouldn’t do justice to ‘summing up’ Pellegrino’s philosophy in a blog post, a central aspect is that:

Cure may be futile, but care is never futile.

The optimal end of healing is the good of the whole person– physical, emotional, and spiritual. The physician, manifestly, is no expert in every dimension. He or she, however, should be alert to the patient’s needs in each sphere, do what is within his or her capabilities and work with others in the health care team to come as close as clinical reality permits to meeting the several levels contained in the idea of the good of the patient. [1]

Considering the fact that a patient’s physical condition often provides the trigger to visit a doctor, it follows naturally that doctors have a reputation of focusing on the physical aspects health. Sometimes they are so focused though, that the patients’ emotional and spiritual needs are forsaken.  Although this applies to all aspects of medicine, I think it is particularly relevant to healthcare at the end-of-life which provided a good framework for my talk with the Life Society. It was also helpful for the conference last week where the keynote lecture was about international perspectives on the euthanasia debate… AND this week’s topic in my Case Studies module: “Ethics at the end of life– the biopolitics of dying.”

This post would get out of control if I tried to summarize all of the points relevant to this topic, so instead I’ll leave you with some important questions that I’ve been mulling over:

  • Does care change when cure is futile? Should it change? How so?
  • Aquinas’ Doctrine of Double Effect is often cited as a reason to prohibit euthanasia. Is there really a difference between [a] giving medication to a person that is intended to give them comfort but has a foreseeable outcome of shortening his life and [b] giving medication that has the intended effect of shortening his life? If there is a difference, how should this inform our ethics and legality of end of life care?
  • Conversations about emotional components of health (and even more frequently, spiritual components of health) are often omitted from clinical encounters. How does this effect patients’ care?  Should physicians be responsible for providing this care? If yes, in what capacity? If no, who (which member of the health care team) would better be able to provide this care?

Until next time,

A

[1] If you have access to a university library or other collection of journal articles, I highly recommend reading this full article! –> Pellegrino, E. (2001). The Internal Morality of Clinical Medicine: A Paradigm for the Ethics of the Helping and Healing Professions. The Journal of Medicine and Philosophy, 26(6), pp.559-579.

Featured image: St Peter’s by night

Are the proposed mtDNA transfer techniques ethical?

Media coverage on “3 person IVF” has admittedly eased up a bit after the House of Commons voted in favor of the proposed mitochondrial DNA (mtDNA) techniques that I talked about in my blog post from last week. However women affected with mitochondrial diseases as well as members of the bioethics community know the debate is far from over.

As the astute reader may have noticed, I deliberately tried to leave any firm opinion out of my previous ‘news update’ from last week. As safe as it may feel to hide behind a news report, one of the most reiterated lessons during my studies in bioethics is that we cannot be afraid to make normative statements.  Translated into syllabus requirements: each week 2 students have to present an ethical analysis of a case study (10 minutes presentation, 10 minutes Q&A).

This week was my turn, and I had the timely opportunity to present on mtDNA transfer.  To add to the excitement, this week we had class at the Nuffield Council on Bioethics— which meant that I was presenting on the turf of people who published a extensive (98 page) bioethical review of these techniques before publishing their endorsement in 2012.

If the PNT and MST techniques are proven to be acceptably safe and effective, on balance it would be ethical for families wishing to use them to do so. [5.2, p88]

After a quick hello, I cut to the chase: “my presentation today will look at a subset of concerns that challenges this conclusion.”

Needless to say, adrenaline was running high.

 

My assessment: UNETHICAL

There are long lists of points to consider in reviewing these new techniques, but since I only had 10 minutes, I tried to focus on areas that I felt have largely been brushed over in the publicized discussion.

 

1. The novel use of the human embryo

For some people… the merging of the [pronuclear] DNA from the parents to create an embryo with a unique genetic identity is morally significant. Those holding this view are likely to find [pronuclear transfer] morally preferable [to nuclear transfer] because of the higher moral status afforded to the embryo once this stage of development has been reached. Given, however, that the law permits research up to 14 days after fertilisation where it is ‘necessary and desirable’,  and the BMA supports this position, the BMA does not consider this to be a relevant distinction in terms of developing policy for mitochondrial transfer. [4.58, p63]

I acknowledged the obvious question (Is the outcome of mtDNA transfer ‘necessary and desirable’?) but for time sake marked it for Q&A. Instead I focused on the assertion that this point was irrelevant to policy making.

Pronuclear Transfer (PNT) uses embryos in a way that is significantly different from previous reproductive treatments such as preimplantation genetic diagnosis (PGD) with in vitro fertilization (IVF)— a technique used to select embryos to reduce the probability of passing on deleterious genetic conditions.  An oft cited argument (ie: Savulesco) in support of such technologies is that it is not logical to think that all embryos should deserve to live because (if we reference natural procreation with sexual intercourse) approximately 3-5 embryos are created and lost for every live birth.

Both proposed mtDNA transfer techniques would utilize this same selection step before implanting embryos in a woman.  However, PNT first requires the creation of a ‘donor embryo’ for the specific purpose of harvesting its healthy mitochondria.  This embryo is NOT created with the chance of being selected.

Those of you that have seen The Island (2005) in which wealthy people can create a spare body from which they can harvest necessary transplants, may understand why I cringe at this thought.

In evaluating the ethics of novel techniques like this, it may be most appropriate to return to first principles.

Instead of / in addition to asking: How can we match moral value with a quantifiable measurement (ie: number of cells, number of days old)?

Perhaps we ought to ask: Is it ethically acceptable to create embryos for the means of other embryos?

 

2. The increased need for egg donation

When compared with current artificial reproductive technologies (ie: PGD / IVF, donor egg) the proposed techniques require 2x as many eggs– one from the affected mother and one from the female mitochondrial donor.

The BBC reported… “HFEA says people should feel the same about [gamete donation] as they do about altruistic, or living, organ donation.” HFEA Chair Lisa Jardine was quoted in the Daily Telegraph as saying that she wanted egg donation to become ‘as obvious as blood donation’. [4.95, p72]

In a society that promotes a woman’s right over her body and sexual organs through widespread use of artificial reproductive technologies, contraception, and abortion (and paid for under NHS!) this assertion that altruistic women donate eggs is dubious.

But this is not just a discussion of societal norms, and the medical risks of egg extraction. (Note: There is ~10-14% risk of ovarian hyperstimulation syndrome for women that have eggs extracted.) This is also a discussion of justice.

We do not consider it appropriate for a regulator to set a limit on the number of times a mitochondrial donor can donate eggs for research or reproduction, other than to protect her from repeated ovarian stimulation. [4.149, p84]

Since 2012, NHS will pay women a flat sum of £750 (+ compensation for travel, childcare, accomodation, etc) per donation cycle. Currently, there is a ’10 family limit’ to prevent the dystopian situation where children produced from donor gametes might unknowingly have children with half-siblings.  Without a limit on the number of donations that women could make, we amplify the concerns that we’ve had about incentivizing kidney donations– it bears a great risk of exploiting the poor.

One interesting analogy shared by a previous egg donor and published by Center for Genetics and Society is that “saying that financially struggling young women donate eggs out of the goodness of their hearts is like saying that poor men work in coal mines because they are so concerned that the rich have enough electricity.”

I give the UK the benefit of the doubt and say that it does not want to end up in a situation where we are shipping in donated eggs from women in impoverished countries where £750 could stretch a lot further than it does in London.  So, are we willing to increase the commodification of our own English women? And mind you, because of our understanding of medical tourism, these English eggs will NOT just serve English people, but the wealthy.

 

3. The role of the affected woman’s voice

[Our son] was 2yr and 4 mths old [when he died of Leigh’s disease]. He had very little quality of life and was very ill and suffered greatly, as did the entire family. These last couple of years have been devastating beyond belief for all of us. We have one healthy daughter who is nearly 5. We would love more children to make our family complete but cannot take the risk this could happen again, so until our gene is found, we are pursuing donor egg options… We would 100% inform any child born of the techniques used, and feel strongly that the child would be grateful to have a genetic link to myself (mother) rather than no genetic link at all (with the donor eggs we are currently using). I believe the impact on the child would be minimal. It only takes me telling them the story of how our son died to make them realise why we would have pursued this technique to ensure another child didn’t suffer this way. We would 100% travel abroad for this technique, we are already going to Spain for our donor eggs… [4.99, p73-74]

I don’t think anyone would debate that this is a powerful account. And a history of patriarchy in medicine demonstrates why it is important to listen to the voice of the patient.

But while narrative accounts are not necessarily confined to rules of rationality, the arguments of bioethicists must be based in reason.  We must recognize these voices as a member of the orchestra, NOT the director.  The implication of letting emotion rule is not just detrimental to our arguments, but also to the affected group. Passion feeds on passion.  If affected women were constantly told that this is unsafe or at least that the safety / efficacy cannot be accurately assessed because of many unknowns, I don’t think we would have statements like: I believe the impact on the child would be minimal.

So my final question: Is it ethical to emphasize an emotional narrative such that sincere risks are made less prominent?

 

Summary:

1. When evaluating the ethical nature of novel biotechnologies, it may be necessary to return to first principles. As demonstrated with the examples of creating donor embryos via PNT and increasing the call for egg donation, relying on previous standards is inadequate.

2. Incorporating the patient’s voice into ethical debate is powerful. I contend that it is important to keep this voice, but we must proceed with much caution lest we let emotion overpower reason.

3. Based on the interplay between the patient’s voice and an ethical assessment– bioethicists must take responsibility for the endorsements they offer.

I braced myself for a brutal round of Q&A…so I was pleasantly shocked when the majority of responses agreed that I managed to address some important concerns.  I hope by sharing this I have managed to provide some additional points for your consideration.

Over and out.

– ASB

 

Some end notes:

– Featured image courtesy of Silvia Camporesi.

– Many thanks to the people that listened to my musings and helped me refine my arguments over pretzels in the park, through email, and via homing pigeon over this past week. Your support is greatly appreciated!

Pre-Vote News: “Mitochondrial Donation: Is it safe? Is it ethical?”

Last night I had the amazing privilege to attend a debate in the Houses of Parliament regarding today’s vote about whether or not to amend their 2008 Human Fertilisation and Embryology Act (HFEA). The debate was hosted by the Progress Educational Trust (PET), an independent organization that “urge(s) you to vote in favour of the Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015.”

I’m rushing this post to press, so please forgive the lack-luster writing quality– I thought you might enjoy an update while the news is fresh. My understanding of biology is helpful, but please understand that I am no expert on this.  All information provided is correct to the best of my knowledge– but if you see some errors, please let me know!

What is mitochondrial disease?

Most info in this section can be double checked on Wikipedia.

  • A set of diseases caused by faulty mitochondria, the “powerhouse” organelle in the body responsible cellular metabolism– converting the food we eat into energy that is usable by our body (ATP — adenosine triphosphate)
  • Symptoms: mostly effects organs that need a lot of energy such as brain (seizures, demintia); heart (cardiomyopathy “heart muscle disease”); muscles (weakness, cramping); ears / eyes / nerves (deafness, blindness, neuropathic pain)
  • Although in 5th grade we learned that all our DNA is stored in chromosomes in the nucleus of our cells that we received from our parents — half from Mom (egg), half from Dad (sperm)– this is only mostly true. It’s more like 49% from Dad (stored in the sperm’s chromosomes) and 51% from Mom (49% stored in the egg’s chromosomes, 2% stored in the egg’s mitochondria). This 2% is exclusively passed through the maternal line. (eg: George’s mitochondrial DNA came from his mom, which came from her mom, which came from her mom… George’s wife will pass on mitochondrial DNA to their children.)
  • While 85% of these mitochondrial diseases are caused by genetic mutations in chromosomal DNA, ~15% of mitochondrial diseases are caused by mutations in the mitochondrial DNA. This subset of mitochondrial diseases is where we focus our attention.

What is mitochondrial donation?

“A type of in vitro fertilization (IVF) that involves conceiving a child using biological material from three people — the child’s parents, plus a mitochondrial donor” (PET briefing).

You may have heard about this in the media as a “3 parent” embryo.  a somewhat misleading description since parents are not just defined by genetic relations. (Think about parents of adopted children.)  Even if emphasize the importance of genetic lineage, the embryo would only receive ~2% of its DNA from the “3rd parent” (the woman who donates mitochondrial DNA). Remember: 98% of the DNA is from the chromosomes of the egg & sperm.

The HFEA is proposing two specific techniques:

1. maternal spindle transfer (MST)

Mitochondria from a donor egg is transferred to the Mom’s egg. The Mom’s egg (now containing healthy mitochondrial DNA from the donor) is then fertilized with Dad’s sperm using IVF techniques.

2. pronuclear transfer (PNT)

Mom’s egg is fertilized with Dad’s sperm using IVF. A donor embryo is formed using donor egg and potentially (though not necessarily) donor sperm. The healthy mitochondrial DNA from the donor embryo is transferred to the embryo formed from the Mom’s egg and the Dad’s sperm. This technique results in the death of the donor embryo, the ethics of which are briefly outlined below.

See the HFEA’s website for more info on these two techniques.

What are the main ethical considerations?

Lots of things to consider! But for time sake (I have to run to class!) I’ll talk about two:

1. Is mitochondrial transfer safe?

Again, this is contested. Based on the debate yesterday, my understanding is that these techniques have been researched for 30+ years. The majority of this time has been spent with animal research, but the last 5 years have used human embryos. The results are promising, but we wouldn’t understand the effects until it is tested in humans.

This technique is unique in the fact that it changes the germ line. It is very difficult to predict the social and biological harms / benefits of this type of alteration. There have been a few experiments in humans that use similar techniques, (US — late 1990s, China — 2003) but the results have either been unsuccessful or indeterminate.

Note: In the US, the FDA has NOT yet approved mitochondrial donation for clinical trials. This takes for-eh-ver, so even if / when this advances to the stage of clinical trials, it will be a long time before it is available to the general public.

2. What is the moral status of an embryo?

A highly contested question. According to UK parliament (2002) the embryo has some non-negligible moral value that is less than the moral value of person after birth. This matches their policy that permits the use of IVF to select against severe genetic disease and states that embryos may be used for research purposes only when they are ≤ 14 days (“early embryos”).

One of the strongest voices on the other side of the fence is the Catholic Church, which states that “human life must be respected and protected absolutely from the moment of conception” (2270). Contrary to popular belief, the Catholic Church does encourage “research aimed at reducing human sterility” (2375). However, it opposes “techniques involving only the married couple… that dissociate the sexual act from the procreative act” (2377 — eg: artificial insemination / fertilization) and strongly opposes “techniques that entail the dissociation of husband and wife, by the intrusion of a person other than the couple” (2376).  This understanding matches the Catholic teaching that sympathizes with infertile couples but maintains that a child is gift– there is no “right to a child” (2379).  As such, the Catholic Church does not support the proposed changes– especially PNT which creates and destroys the donor embryo, a means to the end of creating a healthy embryo.

The vote will take place this afternoon (London time) so stay tuned to the news!  Based on the views exchanged at the debate yesterday and the fact that IVF is permitted in the UK with costs covered under the National Health Service, I’m betting that this proposal will pass at least in part– definitely for MST, but perhaps not for PNT because of the ethical reasons explained above.

And if you made it through that whole post, here are some photos for your enjoyment.

Sounds of Silence

I’m happy to report that this week was filled with interesting lectures* and other events…. and an extra few hours on the dance floor. 🙂 Though my skills don’t come close to those of the dance.addict@mail.com (no joke) who signed in before me, I am quite enjoying the (non-competitive) classes with the KCL Dance Society.  My hamstrings can attest to the fact that I haven’t done so many kicks since I was a majorette (twirled baton in marching band) in high school.

Dancing, running, or even just walking around town– it is rather simple to take the ability to participate in such activities for granted. I know I’ve mentioned this before with respect to navigating numerous flights of stairs at tube stations without lifts or escalators, but I think it is worth revisiting. This week’s reminder came to me on Guy’s Campus, the science / medical campus.   Since I don’t have classes on Guy’s Campus, I don’t frequent it as much, and thus my decision to find a bathroom quickly became an adventure in the basement of the Hodgkin Building: a maze of sloped corridors presumably designed to accommodate gurneys.  Despite KCL’s good intention of hanging signs (TOILETS —> ) I still couldn’t manage to find the regular facilities.  Having spotted a empty handicapped-accessible room with 1 toilet, I decided I didn’t need to pick a fight about about the poor signage (which didn’t actually direct people to this singular toilet).

Now, I’m sure most of you have entered a handicapped-accessible stall someplace: it’s most notable feature is its large size that can accommodate a wheelchair or other similar medical device.  Hospital bathrooms usually add in a few bars that the patient and / or medical assistant can use for support. This bathroom not only had those features, but also (most memorable for someone who is 5’10”) had the sink and hand dryer at levels that would be easily usable by someone who is sitting.  The engineer in me was taking stock of these details: “Nice! Someone was really thinking when they designed this!” But I couldn’t help but think of the countless other public bathrooms that I had visited where the design seemed to forget that people who are confined to wheelchairs probably have the same desire to wash and dry their hands as people that are able to stand.  I’ve never had to navigate a public restroom whilst in a wheelchair, though I think that if I ever had to design one, that is definitely a test I would want to apply.

In Engineering design courses, we are constantly reminded to envision our product from the user’s lens. For example, my senior design team was tasked with building a hearing screening device for newborns in South Africa. Our motivation was rooted in the understanding that most cases of hearing loss could be ‘corrected’ if deaf children who were diagnosed and given treatment (eg: hearing aids, extra language development instruction, etc) before critical language development years; children who were diagnosed after this period of critical language development (typically identified by unresponsiveness to loud noises or delayed ability to speak) would never attain the speaking proficiency of their normal-hearing peers.   Though I dare say my team did a pretty good job of accounting for many of these nuanced factors that can make or break the successful implementation of a medical device into a community, I don’t think we ever considered whether the parents would actually prefer to have a deaf child.

I mentioned this topic in a post at the beginning of last term, and after months of sitting with this idea, it still doesn’t sit well with me.  But a marked sign of development is the fact that I better understanding the arguments surrounding the case and can articulate some of my own perspectives that amount to more than ‘an odd feeling’.

Another marked sign of progress is my improved reading speed.**  In between my assigned readings for my classes, I’ve managed to read some more about this case of choosing deafness in the book that our program director (Dr Silvia Camporesi) recently published–  From Bench to Bedside, to Track & Field: The Context of Enhancement and its Ethical Relevance.  Despite the fact that my teammates and I didn’t consider the possibility that some people would prefer to have a deaf child, Silvia notes that:

“Empirical research suggests that deaf people often have a degree of preference for a deaf child, and a rather smaller number would consider acting on their preference with the use of selective techniques. [***See references below.] It turns out that such parents do not view certain genetic conditions as diabilities but as a passport to enter into a rich, shared culture” (p 54).

THAT is certainly some food for thought for engineers trying to implement hearing screening devices.

Last week we were invited to attend Silvia’s book launch. This was pretty exciting since the last book release that I can remember attending was for Harry Potter 7, and no, J K Rowling did not make a guest appearance at Meijer. This intimate event was shared with a good showing from our Social Science, Health, and Medicine department as well as Silvia’s husband & parents who made the trip in from Italy!

At the book launch with some of my classmates. Photo courtesy of Silvias mom. :)
At the book launch with some of my classmates. Photo courtesy of Silvia’s mom. 🙂

Considering the theme of my musings, I was excited to learn about and attend a Deaf Arts Festival hosted in London this past weekend. (Photos courtesy of Silvia.)

I managed to catch the last part of the student theatre production. Although they provided some super-titles on the background screen, the main method of communication was British Sign Language and a bit of loud, low frequency sounds that you could feel.  Perhaps my favorite part was the silent round of applause at the end of the show– something that looks quite similar to jazz hands or spirit fingers at a basketball game.  I can’t say I understood everything (I think they were performing a modern interpretation of Hamlet?) but it certainly provided some good think time.

And now I’ll leave you here to give you some think-time of your own.

Cheers,

Andrea

*I’ve saved my notes from one of my favorite lectures this week which gave a philosophical response to “What does it mean to love a person?”  If I can time this well, I might be able to release this mid-February… 😉  Stay tuned!

**I suppose that comes with practice, and goodness knows that those skills had become quite rusty during my years at UM.  Reading a biotransport textbook (30% text, 70% equations) is vastly different than reading a paper about withholding blood transfusions from Jehovah’s Wittness children.

*** References:

Middleton, A, J Hewison, and R F Mueller. 1998.  “Attitudes of Deaf Adults Toward Genetic Testing for Hereditary Deafness.” American Journal of Human Genetics 63 (4): 1175-1180. doi:10.1086/302060

Stern, S J, KS Arnos, L Murrelle, K Oelrich Welch, W E Nance, and A Pandya. 2002.  “Attitudes of Deaf and Hard of Hearing Subjects Towards Genetic Testing and Prenatal Diagnosis of Hearing Loss.” Journal of Medical Genetics 39 (6) (June): 449-453.

Featured image: also from the Deaf Arts Festival. Photo courtesy of Silvia.

Testing 1-2, Testing 1-2-3

Hello from London again, folks!

It’s been a while since I’ve written, so this first post back will be kind of a summary of the last few weeks. Despite my radio silence, I haven’t been twiddling my thumbs.  My visit back home was wonderful and also quite packed.  Highlights included (mostly in chronological order):

 

Getting a surprise pickup from the airport from my brother Franz. My luggage was delayed which caused a bit of a ruffle in my plans for getting back to Michigan that night, but we made the most of it– espresso nap at Franz’s apartment and then a quick costume change before I accompanied him to a work Christmas party.

 

Receiving a ‘Welcome home!’ from my Grandma Berkemeier, who passed away (shortly after this cherished hug) on December 22.  Although our hearts were sad to see her go, we were filled with peace knowing that she was able to celebrate Christmas with Grandpa Berkemeier (who passed away when I was in 6th grade).  ‘Give us a reason to celebrate, and we’ll celebrate!’ she used to say.  So celebrate we did.  St Mary’s Star of the Sea was still beautifully decorated for Christmas and though it is the largest (by space) Catholic church in Jackson, I dare say we did a good job of filling the pews and the air with her favorite pieces of music.  Oh… and there was butter pecan ice-cream at the luncheon. 😉

Grandma Berkemeier
Top left: pictures of my grandparents. Bottom left: Grandma’s casket with a cross carved by my cousin Justin and a bouquet of rose. 79 to be exact: 9 children (red), 42 grandkids (pink), and 30 great grandchildren (white). Right: From her funeral at St Mary Star of the Sea, Jackson, MI. [Funeral photos courtesy of my cousin, Liz Calhoun.]

Swinging by A2 for a quick visit with some amazing friends.  I was also invited to sit on the other side of the RMJ interviewing table.  This was a revitalizing experience that reminded me of the intentions of the fellowship, the goals that I began making when I embarked on this journey not too many months ago, the progress I’ve made since then, and the many moons I have to still cover.  Congratulations to the 2015-16 fellow, Allison McDonald!  You will all be in for a treat in following her adventure next year.

 

Cheering loudly for my sister Gretchen as she received her Master’s diploma in Clean and Renewable Energy from the University of Dayton.  You go girl! Such a role model for me!!

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Gretch with some proud parents 🙂

 

Spreading some Christmas cheer with good ole’ caroling. Of the 20 or so friends and family that participated in the shenanigans this year, I believe Joan Campau won the “longest journey” competition: home from Panama, where she has been serving in the Peace Corps since Feb 2013.  Such a treat to see her in person!

 

Hosting Christmas festivities at our home this year.  We managed to prepare an Americanized wigilia (Polish Christmas Eve dinner) with the favorite dishes including pierogi (dumplings stuffed with potato, cheese, etc that are then boiled & fried) and barszcz czerwony (beet soup).  Attempting to pack 15 of us around the dining room table produced a scene fit for television.  Despite the chaos that inevitable comes with having the house brimming with people, it was so wonderful to be surrounded by the people I love.  Slumber partying on the living room floor also brought back fond memories of scheming with my older siblings to stay awake until Santa arrived.

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Watch your elbows! That might be someone’s face you are hitting…

 

Ringing in the new year with my boyfriend Ben Brelje (UM Aero Engr — BSE ’13, MSE ’14) and his family. Such wonderful people!  And especially generous in giving me study time to prep for exams…a and b nye

 

(The less than exciting part)

Exams were waiting to greet me <48 hours after I arrived back in London.  As if jet-lag wasn’t enough to combat, King’s College London has an exam system that is about as foreign to me as any of the experiences that I have yet had over here.  I’ve grown used to the UM Engineering (honor code) un-proctored exams so to be circled by people with INVIGILATOR stamped on their brightly colored vest was… well, different. It was also a bit nerve-racking because the exam took place at a convention center that was 50 minutes away from campus.  (Not too bad of a commute, considering how large London is.)  Furthermore, we took the exam with students that had exam lengths that were of different lengths than ours.  Imagine trying to concentrate in a foreign environment when you jump with the sound of the loudspeaker:

One hour has now passed. Those students taking one hour exams must now stop. You are reminded that continuing to write after the exam has finished is a violation of….

And then after 1.5 hours… and 2 hours. FUN.

Oh well. Not worth being anxious about a situation that can’t be changed.  I just chock that up to experience.  Though entering a new discipline has been challenging in more ways than one, I have learned so much.   I look forward to continuing to learn in my remaining months as the RMJ fellow, not only via structured lectures but also through kitchen chats with my flatmates.

Here’s to many more exciting adventures in 2015! xx (<– One of the British ways of signing off that I’ve adopted. Kissing is more ‘proper’ than hugging I guess haha.)

[Featured image: A winter sunset from Waterloo bridge. No photo editing, folks. I’m not pretending that London skies are always this clear, but when I can see the sun, it has a tendency to take my breath away.]