As promised, I now return to the continuing story of my curriculum. I’m going to focus on Foundations of Bioethics and Society (FBS) this time, but you can get an idea of what I’ve been up to in my other course (Foundations of Social Science, Health, and Medicine) by looking at the featured picture above: that was my reading assignment for last week. Needless to say, I’m getting acquainted with the libraries… 🙂
In Foundations of Bioethics and Society (FBS), we root ourselves in ethics (philosophy) and then apply those ethics to biomedical questions. Next semester I will be taking an entire course on case studies, but for now we just receive taster themes to stay oriented.
We’ve quickly covered (or for those with a background in philosophy– reviewed) core theories such as Utilitarianism, Consequentialism, Cosmopolitanism, Kantianism, Andreaism… (Ah ah ah! Testing you… 😉 ) For a new-kid like me, this reading was quite dense.
To help me understand, I picture these theories on a number line where you have the extreme cases (-1, +1) but you also have the indefinite amount of theories that fall somewhere in this spectrum (… -0.0009, -0.0008,… +0.0008, +0.0009…)
Take for example the following set: Moral Realism, Moral Relativism, and Value Pluralism: *
- Moral Realsim — There are right things, and there are wrong things. This is a fact. Always. When we look at history and see that things are wrong that we used to think were right (eg: slavery) we identify this as moral progress; the core morals never changed, we just have a better understanding of them.
- Moral Relativism — Defining something as right or wrong depends on a lot of different factors (eg: the time period, location, the group that is being considered, etc.) Moral progress doesn’t exist. Just because I define something as right, you could define it as wrong and we could both still be correct. Situation-based understanding is a must.
- Value pluralism — Some things will always be right / wrong (like moral realism!), but some things depend on the time period, location, culture, etc. (like moral relativism!) But how can this be so?! You identify things as right or wrong by considering different values. For example, the JUST response is X; the MERCIFUL response is Y. In some situations justice is more important than mercy… in other situations it is the opposite.
In a classroom with students from around the world, with various educational backgrounds and extra-curricular life experiences, we are able to find people with home-bases set up throughout the entire spectrum. While thrusting your hands up and shouting Tradition! seems quite enticing at times, it is not altogether beneficial in a classroom. Instead, we take a lesson from Tevye and practice contemplating what it is like ‘On the other hand’. This doesn’t mean we always change our minds– in fact, we often do not– but the idea, just as it was in engineering school, is that we will learn to think.
So what are we thinking about? The themes presented with lecture (and incorporated into our reading assignments and formal discussion sections) so far have been:
1. Sex selection
Is selecting the sex of your child ever ethically acceptable? If yes, under what circumstances?
- When discussing “sex selection” I am referring to pre-implantation embryo selection. This Wikipedia article gives general info about the most common technique that I’ll discuss– in vitro fertilization / preimplantation genetic diagnosis, or IVF/PGD. Note, to accept embryo selection of any kind as being ethically sound practice, you also have to accept in vitro fertilization as being an ethically sound practice– an admittedly contested practice.
- “In the UK, sex selection is only allowed to avoid having a child with a serious medical condition; it is illegal to carry out sex selection for social reasons (e.g. for family ‘balancing’)” (cite: UK’s Human Fertilisation and Embryology Authority)
- In the US, sex selection is allowed– not only for selecting against serious medical conditions, but also for family balancing. However, “the Ethics Committee of ASRM ‘recognizes the serious ethical concerns’ that gender selection raises and ‘counsels against its widespread use'” (cite: American Society for Reproductive Medicine via HRC Fertility Clinic’s GenderBaby).
- What is meant by so-called “family balancing”??? Good question. “Family Balancing is the term for gender selection done for the purposes of achieving a more balanced representation of both genders in a family. For example, if a couple has a son and desires a daughter, or there is an otherwise unequal representation of both genders among current siblings, the couple would be appropriate candidates for Family Balancing at GIVF” (cite: Genetics and IVF Institute).
2. Shortage of organs donations
Is there an ethical market for human organs? What are the ethical implications of an opt-out organ donation program? Should people who have participated in activities that are detrimental for their health (eg: smokers) be removed from organ transplant wait lists?
- Wales will be adopting an opt-out program beginning in December 2015. Read more HERE.
- Since there are a limited number of organs available, for every person A that receives a transplant X, person H (the next person in line that is a proper match for the available organ X) will go without. In some cases, this means that person H will die waiting for the next good match.
- The match system is especially a challenge for pediatric patients. Take lung allocation as an example: as indicated in the figure below, pediatric candidates will only be at the top of the list for pediatric lung donations. Makes sense right? (The closer the match, the greater the probability there is for a successful implantation.) Except when you consider that the number of pediatric lung donations is dwarfed by the adult lung donations. Thus, being placed into the queue for pediatric lung donations is a lot like receiving a death sentence. In 2013 (surrounding the case of Sarah Murnaghan) it became possible for pediatric candidates to formally appeal to be placed in the “adolescent” category, thus increasing their chance of receiving a much needed transplant. You can read a brief background to this change in allocation HERE.
In case it isn’t obvious, I am quite interested in pediatric organ allocation and am considering making this the focus of my final paper for the FBS module. Are these changes for the better? How receptive should governing bodies (eg: US Dept of Health & Human Services) be to personal pleas to change a patient’s order in the transplant queue? Considering the influence that we have on governing bodies, what role should we play in participating in these types of personal pleas (eg: social media campaigns)?
Many thanks to all the people involved in organizing and participating in the Notre Dame Medical Ethics Conference (March 2014) where I was first introduced to some of these questions and concerns regarding pediatric organ allocation.
3. Disability and Enhancement
This is actually the name of a module that I will be taking next semester, but we’ve already started conversations on this topic through the Bioethics Film Screening Series that my program jointly hosts with the Department of Film Studies. (Read about this series HERE.)
Last Tuesday we viewed Mandy, a film made in 1952 about the challenges faced by a couple trying to provide the best care for their deaf daughter. Since my senior design team worked on developing a hearing screening device, I was rather well versed on the topic of hearing loss. Even still, I learned SO much from the diverse perspectives provided by my Bioethics peers as well as a professor of Film Studies.
Something that felt completely new for me was the question of selecting for deafness. What?! you may ask (as seems to be the only response I’ve received when introducing this topic to someone.) Yes, you read that correctly: specifically selecting an embryo that has hearing loss coded in their genes. This NY Times article gives a good introduction to this concept of selecting for disability.
My questions: In an age that hedges classifying individuals as “disabled”, how do we (and how ought we) understand normal health and the role that medical professionals have in providing healthcare? If selecting for deafness is ethically sound, can we also support decisions to select for other conditions that are historically viewed as being on the negative end of the “spectrum” (eg: blindness, color-blindness, etc). What about conditions like Trisomy 21 (Down’s Syndrome)?
This last question stemmed from a discussion I was sharing with a classmate as we discussed the ethics of testing a fetus (via amniocentesis) for Down’s Syndrome. The rates of “elective pregnancy termination” after prenatal diagnosis with Trisomy 21 range from 50-90% depending on the country, year, etc that the study was conducted. Despite the eugenic-alarm that this type of statistic activates, my colleague defended the stance that access to this prenatal diagnosis should not be limited: information is a prerequisite for making well-informed decisions. People with Down’s Syndrome are wonderful, loving people with dignity that must be respected AND (even though it is not well publicized in the media) there are families that specifically opt to adopt children with Down’s Syndrome. (See the website for the National Down Syndrome Adoption Network for more information.)
Whew long post! And not many pictures!!
I think that should give everyone enough to chew on for the next few days. I recognize that these are not easy or comfortable topics, but they are important. If there is something in here that gets you fired up– whether that be in the positive or negative sense– great. Now do something with that fire! At the very least, start educating yourself on what is out there by skimming through the links that I’ve included throughout this post. (I tried my best to find credible sources that were still easy to digest even if Bioethics isn’t your main squeeze.) I know think-time is precious, but just try to ponder some of these ideas as you drive to work, prepare lunch, or brush your teeth before bed. Though the world of bioethics does not always feature rainbows and kittens, for an engaged citizen to plead apathy toward such topics is at best irresponsible.
* I had some familiarity with these specific theories before beginning my program but for all intensive purposes, I’m the new kid on the block when it comes to philosophy. For those of you that are also new to this, I will do my best to distill this down to bite-size chunks. Keep in mind that I am just beginning to study this AND any time you “distill” you eliminate nuances. If you are interested in learning more, a great online resource is the Stanford Encyclopedia for Philosophy; it’s kind of like the Wikipedia for all things philosophy.