Over and Out

Hello dear readers,

 

The sun has set: today marks my final post for this Roger M Jones blog. It’s been a whirlwind of a year, and I hope you have enjoyed following these posts as much as I have enjoyed writing them.

 

Dissertation marks were released yesterday, and I’m happy to report that I am moving forward with plans to publish my research. This will involve a bit of reprocessing since most academic journals find 5,000 or 12,000 word articles more palatable  than a 18,000 word book.  I will also be converting this into a lecture since I have been honored with an invitation to present my research at the VHL Medical Symposium this spring.

 

Beyond this academic work, I have a few other unique opportunities simmering in the crock-pot which should keep me engaged before I move (God willing) into the next chapter of life with Medical School.   I will certainly miss seizing opportunities to join bioethics discussions at the Houses of Parliament or take a quick trip to <insert European country> for a conference, but this past year has taught me that engaging with bioethics does not have to (should not) be confined to a posh conference room. Bioethics can be encountered in healthcare clinics, on the performance stage, and in the family room, and I look forward to continue contributing this field in multiple venues.

 

Often times “Where am I going?” only makes sense when answered in conjunction with “Where  have I been?” To provide this wider perspective, I thought it might be helpful to share an excerpt from a past essay:

 

…As I continued with my science [Biomedical Engineering] curriculum, I realized my education was almost exclusively focused on what treatment IS given but not how to determine what treatment OUGHT to be given. Beyond technical limitations, what factors should be considered when developing a treatment plan? When working with children, disabled persons, the elderly, or other vulnerable populations, how should the voices of physician, patient, and advocate be balanced? Should physicians strive to be nondirective?

Fortunately, these musings did not fade in the margins of my BME design notebooks; I advanced them more formally as the UM Roger M. Jones Fellow, studying Bioethics & Society at King’s College London. One of the most rewarding aspects of this master’s program is my dissertation research, in which I am exploring ethical considerations relevant to reproductive counseling for adolescents diagnosed with VHL…

While I will not pretend to have found the answers to all of my questions during this past year, I have developed a foundation in navigating bioethical “is/ought” dilemmas. This foundation informs my desire to practice medicine in a manner which treats the patient as an end, thereby seeking to restore and maintain the patient’s wellness. In complementing my BME understanding of the body with a philosophical understanding of the mind and spirit, I’ve grown in my understanding of “cura personalis”, and I look forward to more fully equipping myself to care for the entire person as a medical student.

 

I am immensely grateful for having this opportunity as the 2014-15 RMJ fellow, and I look forward to following Allison and future fellows in their endeavors.

 

Cheers,

 

Andrea

 

Featured image: enjoying London during a walk home to my Pimlico flat

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The Netherlands – Presenting preliminary research findings!

Back in March, I pursued an opportunity to present findings from my research at a symposium in the Netherlands that coming August. As with most of my adventures, I planned to add some pleasure to this business trip.

Pleasure:

I have a fair amount of stamps from the Netherlands in my passport (thank you Delta / KLM transfers) but this was the first time I left the airport. I spent most of my time in Amsterdam and Utrecht, but I also skipped over to Den Haag for a solid 40 hours. See captions below for a quick overview:

Business:

I’ve struggled with putting pen to paper on this topic for quite some time because, in short, the story is complicated. For the sake of a blog post, I figured the best way to succinctly share is to publish a short response I submitted for a secondary medical school application.

Discuss a time when you stepped out of your comfort zone. What were the challenges? What did you learn?

In August, I had my first opportunity to travel to the Netherlands. International travel always presents challenges, but this trip in particular pushed me out of my comfort zone: I was attending the International Symposium for Young Adults with von Hippel-Lindau (VHL) as both a patient and a professional, presenting my dissertation research on reproductive counseling for young VHL-positive people.

During introductions, we were encouraged to share our current “VHL challenge”; I met people like T who had traveled 30+ hours by train, because his current post-operative instructions barred him from flying. I was moved by my peers’ courageous stories, simultaneously feeling blessed and self-conscious of NOT having the token scar along the nape of my neck indicative of brain surgery. I was shaken from these inner reflections when K shared her concerns that VHL would be incompatible with having children. Trying to offer help, the symposium coordinator singled me out as a “subject matter expert”. I flushed.

I enjoy public speaking, but presenting as both a patient and researcher quickened my heart rate. I was confident in my research, but the topic of reproduction is nevertheless sensitive. My presentation increased the awkward gap between the participants and me until I finished an interactive presentation with a silenced audience. Later that evening, participants began to approach me individually, sometimes with a reflective statement, technical questions, philosophical musings, or a quiz about my personal views. More commonly, however, they greeted me with positive encouragement: we are really appreciative to hear this from a VHL-positive person like you who not only knows her stuff but truly GETS it. As a physician, balancing authoritative knowledge with empathetic care will be a persistent challenge, but I know the more I practice navigating this awkward tension, the better I will be able to serve my patients.

A slide from the presentation before mine. This supports one of the findings of my research: adoption is a

A slide from the presentation before mine. This supports one of the findings of my research: adoption is a “forgotten” option.

What is the value of a human embryo given a genetic diagnosis?

Process: <ˈpräˌses,ˈprōˌses> to mull over an idea by oneself and with many different good listeners until it becomes possible to articulate a coherent thought

Since I recognize most folks aren’t going to want to read the book that is my dissertation, I thought you might be interested to see an example of how I developed an idea within my dissertation using existing literature and patient interviews.

Processing Notes

(The following passage is based off an exchange with my parents from 15 July 2015.)

I’m chuggin along on my dissertation and thinking back to some of our conversations on the topic of reproductive technologies for couples affected with a genetic condition.

One of the issues I’m trying to sort out is the seemingly paradoxical views that patients have regarding the value of a person (embryo / fetus / infant / adolescent / adult) diagnosed with VHL.
On one hand, patients seem to reject the ‘expressivist argument’ that using PGD to select against embryos with VHL expresses a value-judgement that people with VHL are worth less than people without VHL.
e.g. participant response: “I don’t have a problem with my own self worth… I’m thinking more about, I want a healthy baby” (p57 in dissertation).

On the other hand, patients are uncomfortable with ‘taking their own medicine’ so to speak.
e.g. participant response: “My dad didn’t know [he had VHL], but I would not have wanted him to… um… to have… eh chosen to abort me” (p58 in dissertation).

It seems like they would agree that their life is worth living.

The most recent article I was reading was published in the Medical Law Review with one of the authors (Rosamund Scott) from King’s College London and another (Bobbie Farsides) having just given the keynote lecture at the International Medical Ethics Conference that I attended last month in Newcastle.  The ‘utility’ of the embryo– both in terms of gestation and research– is most promising when the embryo is fresh and not frozen, so there is motivation to approach a couple with opportunities for donating ‘spare’ embryos for research. However, as highlighted in the article:
“On the goals of research, the authors note that ‘[f]or isolation of an ES cell line from the inner cell mass, it is essential that these suboptimal surplus embryos develop to blastocyst stage’ and further that a then-recent study suggested that frozen embryos were less likely to do this.87 Most significantly, of the ‘suboptimal surplus’ embryos donated to research in this study, 34% did indeed develop into blastocysts. From the perspective of the donors, this is a highly significant concern and it brings us to a crucial point that may be little known outside the clinic and the research laboratory, which is that a good research embryo might also be a good treatment embryo. In other words, 34% of the ‘suboptimal’ embryos in fact had good potential to result in a live birth.”

Alas: a conflict of interest. Hospitals that house both IVF clinics and human embryonic stem cell research must somehow non-coercively convince couples to donate embryos.

The authors recognize this dilemma and suggest a solution: thou shalt not ask healthy couples to donate fresh embryos, but it is permissible to ask couples undergoing IVF / PGD for their fresh embryos that have been given a positive diagnosis.
“A couple who has chosen PGD for a serious inheritable condition is unlikely to wish to have an ‘affected’ embryo transferred or frozen and is more likely to consent to such embryos passing out of treatment use as ‘spare’.”

Seems like this just legitimizes a label of ‘life unworthy of life’ or at the very least of ‘significantly lower value’ than a diagnosis-free embryo. And it does so based on the parents’ decision who (based on my small study) vocalize that they do not think PGD makes any value judgement.

The HFEA (UK’s Human Fertilization & Embryology Authority) has an official list that keeps growing of ‘approved’ genetic conditions for which PGD is permissible and can be funded by the National Health Service. VHL is one of them. While I recognize that people diagnosed with VHL can have an awful case of the disease, I still can’t wrap my head around a decision to blot out life based on genetic makeup. Especially when the expressivity of VHL is highly variable (ie: just as some people may have a terrible time with VHL, others may have negligible problems.)

 Here’s the link if you are interested in reading the whole article.

Love you much,
Andrea
Featured image from: http://www.ivfcenterhawaii.com/images/PGD_IVF.jpg

Españia

After such success at combining Notre Dame’s medical ethics conference with a little adventuring of Rome, I decided to use the same logic when booking my flight to Madrid for the Bare Life & Moral Life Symposium hosted by Saint Louis University, University of Notre Dame, and Trinity University.

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Since I’ve been splitting time between my dissertation and medical school applications in recent weeks, my trip to Spain was admittedly less planned than it was for Italy.  Based on my very quick intro to these cities, I have to say my favor lies with Rome. Perhaps that just means I need to make return visits to collect more data though. 😉

The symposium in Madrid was different from the rest that I’ve been to because it was heavy on (theoretical) philosophy and lighter on bioethical cases. For all of my non-philosopher readers out there, the title comes from Italian philosopher Agamben and his work Homo Sacer: Sovereign Power and Bare Life.  From the Encyclopedia of Philosophy:

Agamben develops [“bare life”] from the Ancient Greek distinction between natural life—zoe—and a particular form of life—bios…Neither bios nor zoe, bare life… can be defined as “life exposed to death”…. (For more, see: http://www.iep.utm.edu/agamben/)

To say I was out of my league is to put it kindly. There were scholars of all types: not just proper philosophers, but also physicians, ethicists, and theologians with specialties in Judaism, Catholicism, and multiple Christian denominations. As such, I spent most of my time silently soaking in the presentation and Q&A session and saving my comments for the more informal but still very robust conversations (mostly related to care at the end of life) over coffee, lunch, and tapas.

Perhaps my background in engineering has made me very comfortable working in teams, but in comparison, the life of the academic can seem quite… lonely.   To my refreshing surprise, however, the symposium attendees in Madrid were about the most charitable, most welcoming academics I have ever met.  They were not only eager to explain some philosophical building blocks to which I hadn’t previously been exposed, but they were also interested in learning about my perspectives as a biomedical engineer / bioethicist / medical school applicant.

On the subject of Spain-adventuring, I must say that my short day trip to Toledo stole the show. Though this may surprise some of my readers, I must admit that I am not too fond of touring churches. I quite enjoy encountering different houses of worship, using them for what they were intended and not really just treating them as a tourist spectacle equivalent to the London Eye or Big Ben.  Nevertheless, since I was only in Toledo for a few hours and it didn’t coincide with the mass schedule, I paid my admission fee and accepted the audio guide that was included with the ticket. In short: SO worth it.

A segment of the ceiling

A segment of the ceiling

Beyond the cathedral, Toledo was just a beautiful city to wander—what you’d imagine if you thought of an old Spanish city: dusty cobbled stone paths, a fortress on the river, and intense summer heat. Here are a few pictures that might convey this better than words.

 

Adiós,

Andrea

Featured Image: taken within the Toledo Cathedral

Irish Solstices

It seems crazy to think that it has been more than 6 months since I was last in Ireland. Since I never actually got my December post up, I figured this was a good opportunity to add some bits from those 5 days in Dublin with the fantastic hostess, Katie!

Strong first impressions remain:

  • Ireland in December is cold. Really cold. Although Dublin and London are fairly close, Dublin is MUCH more damp. Add a bit of winter wind and wowza. Come June, the frigid air was gone, but I was quite comfortable in jeans and a fleece. I survived December with a fleece and my dress jacket (which was more than enough in London), but I could have benefited from a wool sweater or two. The tool of survival: hot water bottles. (As they say in Ireland, ‘Tanks a million,’ Katie!!)
Freezing on the pier at Dun Laoghaire

Freezing on the pier at Dun Laoghaire

  • Since Ireland uses the euro, I thought things would be a smidge less expensive than London. When it comes to food, this is certainly NOT the case.  I don’t profess to have a great understanding of economics, but presumably this is because of importing costs. Porridge was a staple for breakfast (and lunch a few times, too) which made it possible to indulge in a full Irish breakfast.
  • Confession: I remember when I first moved here I kept getting geographically related politics (ie: Great Britain, United Kingdom, England, Ireland / Northern Ireland, Scottish Independence) very mixed up. Traveling and speaking with locals definitely provides new perspective. If you ever have a chance to travel to Dublin, I highly recommend making the Kilmainham Gaol one of your first stops in the city.
  • Biking (or “cycling” as they say) is very common in Dublin. The CocaCola Dublinbikes rental share works quite nice—5 euro for 3 days. The complication in the story, however, comes when you remember Irish Winter Solstice sunlight hours: fluorescent safety gear is near mandatory if you care to ride for more than your lunch hours. During rush hour, this form of transit is elevated to the “extreme” level during rush hour when you start weaving between moving vehicles. (Deep breaths, everyone, deep breaths!) When the traffic is slower, however, it makes for quick transit and a great way to see the lil city.
  • The coast is where it’s at. In December, this meant taking a short train from Dublin to Dun Laoghaire, and in June we visited the west coast. (Keep reading!)
  • Dublin is home to both Jameson & Guinness which seems fitting considering the active pub culture in Ireland. Having toured both the distillery (December) and the brewery factory (June), I can recommend both. Flying Ryanair limits one’s ability of bringing many souvenirs back, but my brother Franz received a teeny bottle of Writer’s Tears, an Irish Whiskey that I first spotted on Katie’s shelf.

For the June visit, I was joined by my friend Zoe, and together we stretched our wings a bit further. We took pit stops in Enis & Gallway…

…But the highlight of our three day jaunt across the island was our coastal walk from the Cliffs of Moher up to Doolin.

From what we could tell, most tourists just make it to the visitor’s center, marvel at the cliffs, and call it a day. On an overcast day, as are a number of days in Ireland, I can understand the desire to make this a short visit. We, however, scored a gloriously clear day and feasted our eyes not only on the “main attraction” (the Cliffs) but also the Aran Islands which are just off the coast. As I expressed previously and will continue to re-state, there is something very awe-inspiring about experiencing natural wonders.

Here’s to a summer of making even more of these memories!

Andrea

Featured Image: 4pm December sunset at Dun Laoghaire

Three cheers for Spring!

If I was paid a nickel for every blog post that I intend to make, well… I would have a lot of nickels by now. But alas, life catches up, and I seem to have far more words floating in my head than I can manage to fit on paper in 24 hours each day. Here’s a tribute to the highlights of Spring 2015!

 

Stonehenge on the Equinox

Cici and Andrea Stonehenge

 

In case you missed that post, check it out here.

Isle of Man

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See Ben’s post here for more pictures & the rest of the story.

 

Lake District

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And see his post here about the “walking” (British word for hiking) in Lake District.

 

Adventures in Scotland

from Glasgow to Edinburgh with Gretchen & Joan

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Theatre bingeing

My love of theatre and the performing arts was treated quite well when I lived in A2, and it has only grown since moving to London. I was probably averaging about 1 show every 6 weeks… until I introduced Gretch & Joan to the West End. After a thrilling night with front row seats to Memphis, we decided that the 2nd of their two day visit to London should be spent going to a matinee (Billy Elliot) and an evening performance (Agatha Christie’s Mousetrap).  Gotta make the most of those London minutes!!

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As a student, I have the pleasure of tapping into the crazy-cheap student tickets with my last my last 6 shows ranging from £0 to£5 each. Just as golfing in Jackson, MI can be cheaper than going to the movie theater, scoring student tickets for the West End can be less expensive than meeting up at the pub. The more that I indulge however, the less I am able to shut my mind off and enjoy the show.   (Well… let’s be real. I don’t think I was ever the type to just shut my mind off.) I described part of this when I spoke of Matilda.  And I think it has become even more noticeable as I indulge. Consider, for example, the Curious Incident of the Dog in the Night. (The Spark Notes summary is here if you haven’t seen the show or read the book.) While the 12 year old girls sitting next to me were trying to solve the mystery during intermission and gushing over how “Christopher is so good at Maths*!!” after the final curtain call, my mind had drifted down some other paths.

 

  • How do we as a society treat people who fall outside of “normal”? From an early age, we learn to be tolerant of people that are different from us. This earns us the badge of being civil. What is the difference between being tolerant and being kind?
  • What responsibilities do parents have to their children? Do these responsibilities depend on the child’s individual needs and talents? I was particularly interested in the contrast between Christopher’s mother and father. The father stayed with him the whole time, but there were some obvious parent / child clashes made more frustrating by misunderstanding Christopher’s autism. The mother—overwhelmed by having an autistic child—copes by having an affair and moving away with the new man, but continues to express her never-ending love for Christopher through letters.

[*Brits say Maths instead of Math. This still hasn’t stopped bringing a smile to my face. 🙂 ]

If I ever become bored, I think I shall develop a lecture series about Social Science, Health, and Medicine in the West End.

 

…And reliving the excitement of seeing London for the first time through the eyes of visitors

Featured Image: from the Columbia Road Flower Market