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.
(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.
Featured image from: http://www.ivfcenterhawaii.com/images/PGD_IVF.jpg