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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RMJ travels from England to Germany

Another quick post:

For those of you that have been following this blog over the past year, you’ll have noticed that I had a good bit of radio silence during my summer writing months. Fear not: I have taken loads of photos and jotted down musings to capture these moments… which will eventually be published as blog posts. 😉  Although finishing my dissertation marks the end of my year as the 2014-15 RMJ Fellow, I’ll be sharing air time during September with the 2015-16 RMJ Fellow, Allison McDonald. She’ll be heading off to Germany this weekend, so stay tuned for her introduction!

All the best and to be continued…

Andrea xx

Rodzina

I was feeling quite good about the progress I was making on my dissertation and medical school apps, so in true Andrea-logic, I decided it would be a good idea to add another dose of adventure. Herein began my grand idea to plan a 12 day trip to one of my favorite spots in the world: Poland.

 

Between junior and senior year, I had the wonderful opportunity to study Polish language, history, and literature in Krakow. If you think Disney World has a touch of magic, then Tinker Bell must have dumped a whole bag of her dust on Krakow. Unlike many of it’s neighbors, Krakow was not bombed during WW2. Thus, the history is astonishingly well-preserved. Plus, the 14th century Wawel castle even includes a good dragon story. Win, win, win.

 

Despite these wonders that Krakow offers, northern Poland (Gdansk and surrounding areas) holds a larger part of my heart. It is from this region that my great-grandparents voyaged to the US with their two children (my Grandma Elizabeth Berkemeier’s oldest siblings) and whatever other material goods they could fit in their laundry-sized basket. There were no internet forums that provided insider details about the ‘American Dream’ or skype to call your family when you safely arrived. Just one way tickets and host of prayers.

 

Although the blood ties to Poland objectively grow more dilute with each passing generation, as I profess in my dissertation, my understanding of family… and parenting… and even life itself go beyond a DNA based-definition.

 

Z Bogiem i do zabaczenia,
Andrea xx

 

 

A small photo essay to share highlights of this visit:

 

 

 

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.

20150630_091206

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