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
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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