Showing posts with label Genetics. Show all posts
Showing posts with label Genetics. Show all posts

Wednesday, April 23, 2014

Thoughts on NUBC: Learning What It Means to "Do" Bioethics

By: Dr. Tiffany Cvrkel

A few weeks ago a group of my undergrad students and I returned from our very first National Undergraduate Bioethics Conference (NUBC). I thought I’d write down a few thoughts about our experiences, and (hopefully) make a case for why attending this conference is a uniquely worthwhile experience.

We have a pretty thriving group of undergraduate bioethicists at UCLA. Most are pre-med students who do independent research in bioethics as a compliment to their intensive lab work and hard science curriculum. They are a passionate (and inspiring!) bunch, and they are always looking for ways to connect with their peers at other institutions.

And that’s the story of how they – not me, their faculty mentor! – found out about NUBC. As they were browsing this “Bioethx Under 25” blog, they found a listing for a conference aimed especially at them. I got an email pitching a trip to Chicago.

It was fitting start. While faculty members are involved in the orchestration of NUBC, much of it is run by undergrads for undergrads. A few of my students decided to submit papers to the conference, and Jessica Kriksciun (one of our seniors) had her paper accepted. They also decided to form a Bioethics Bowl team and compete during the tournament. None of us had any idea what a “Bioethics Bowl” looked like, but it sounded like a decent way to spend a Saturday.

If you’ve never been to a NUBC before, you should know it is an odd marriage of two very different events. The first is the conference itself, run in a mostly traditional way -- paper presentations along with brief Q&As. The second is a tournament event called the “Bioethics Bowl,” where student teams compete by giving well developed/supported arguments and objections regarding bioethics cases. The team with the better arguments wins.

I’ll give you a few moments here to quip about competitive bioethics. Many of my colleagues found this whole set-up an endless source of hilarity. And to be honest, I was a little wary. Some of my colleagues were worried that this kind of thing just reinforces combative relationships between bioethicists – a problematic dynamic that already exists in some places of our discipline. It’s hard enough to work in a cross-discipline space. Shouldn’t we all be trying to get along, not score points against each other?

I had another, slightly different worry. When I paged through the cases that the Bioethics Bowl would be using, I noticed the “ripped from the headlines” format. But the fact that these are real cases involving real people adds an additional burden for our students. I am close with some of the ethicists who worked on one of the cases in this year’s packet. I saw first-hand the devastation and anguish that this case caused for everyone involved. I feared real people’s stories might be turned into nothing more than rhetoric-laden debate fodder, cheapened to score points.

I am not against debate as an intellectual exercise. I was on my school’s debate team as a student, and once upon a time, I coached it. But the goals of debate are not always to find the most subtle, respectful, and nuanced lines of reasoning. The people from these cases? They deserve nothing less.

And when the Bioethics Bowl came around, there was indeed some debate-style rhetoric and hyperbole. But happily, this was not the norm. Most of the teams we saw weren’t trying to be cut-throat in point scoring. They were trying to work through the issues in genuine and sincere ways. There was a lot of “we agree with our opponents on their position, but we’d like to raise an issue that might have been overlooked” kind of dialogue – the kind of dialogue that happens in professional ethics committee meetings. And with a few exceptions, my students left each round feeling like they both made new friends and got to practice articulating true, difficult positions.

But the Bioethics Bowl – by far – was not the highlight of the conference, which you would never know by looking at the attendance numbers. It quickly became clear that there are also two demographics at NUBC, the people who were there for the conference and the people who were there only for the Bioethics Bowl. And the vast majority of people fell into the second category.

This was such a shame. The conference part of the NUBC was amazing. Sitting around the breakfast table before a day of presentations, all of us huddled together, the following conversation happened. One of my students asked, “Um, Dr. Cvrkel? What kinds of questions should we ask the presenters? I’ve been to lots of conferences where I’m not really supposed to ask questions, and this is the first time I’ve been at a conference where I’m the intended audience! What does a good question look like?”

And that’s when we discussed the difference between being a student and being a colleague. We talked about the art of asking useful and supportive questions instead of “gotchas.” We talked about when follow-up questions are appropriate and when they’re not. We talked about how to approach someone to discuss related projects. We talked about how to do bioethics in the real world.

I teach two large lecture classes every quarter; that’s hundreds of students, multiple times a year. And while I try to teach each of my students some of the finer points of bioethics, the famous authors, the important arguments, I can never offer them the experience of doing bioethics with their peers. We always have a power differential in traditional learning environments, and this means students never get to practice wielding their knowledge as equals. But at NUBC, they present their ideas not as students looking for approval, but as scholars looking to advance an idea. And they sit in the audience not merely to learn, but to engage.

The NUBC has been the one environment where my students experienced what it is like to be bioethicists. And that’s not easy to teach. But of all the things I’ve tried to teach my students, I can’t think of any that are more valuable.


The folks at Loyola University of Chicago put on a wonderful conference, and though it was our first, it won’t be our last. We’ll be in Florida for NUBC 2015—you should join us.

Dr. Tiffany Cvrkel is a philosopher, bioethicist, and lecturer in UCLA’s Molecular, Cell, & Developmental Biology department. She is also the faculty adviser for UCLA’s Undergraduate Bioethics Club (aka: The Bioethics Brigade) and runs the UCLA Bioethics Lab, where students do advanced/independent bioethics research.

Wednesday, March 19, 2014

Mitochondrial Donation: Why the Controversy?

By: Michelle Bayefsky

Late last month, the Cellular, Tissue, and Gene Therapies Advisory Committee of the Food and Drug Administration (FDA) met to consider whether research on mitochondrial donation, which could be used to prevent women from passing on mitochondrial disease to their children, was ready to begin testing in humans.  Instead of excitement at the prospect of eradicating mitochondrial disease, which can cause blindness, dementia, epilepsy, and many other conditions, much of the public reaction was characterized by fear, confusion, and hostility.  Headlines from “Genetically Modified Babies” to “Tinkering with Frankenstein: Obama Admin Considers Three-Parent Embryos” flooded the internet, and scientists and bioethicists struggled to refocus attention on the medical feat that is close to being achieved.[1]

Mitochondrial donation involves either transferring healthy mitochondria from a donor into the egg of an affected woman, or inserting the pronuclei of two prospective parents into an enucleated donor egg.[2]  Since mitochondria carry their own DNA and are maternally inherited, children born after mitochondrial donation will technically have DNA from three people – hence the nickname “three-parent IVF” given to the procedure by the press.  This nickname is misleading, however.  The degree to which genetic parentage should be considered synonymous with parentage has already been questioned in debates regarding egg and sperm donation, surrogacy, and adoption.  “Three-parent IVF” suggests a complicated family situation which would be not at all necessary; if social and legal norms have been successfully established for donating gametes containing nuclear DNA to couples with infertility, surely the same could be accomplished with donating mitochondrial DNA.  Furthermore, it seems highly unlikely that we would come to view the donor of mitochondria, an organelle about which most members of the public have little knowledge, as a parent on equal footing with the parents who contribute nuclear DNA and/or intend to raise the resulting child.

Aside from the question of parentage, the major source of controversy surrounding mitochondrial donation is the fact that the technique constitutes a germline modification; the donated mitochondrial DNA would be passed down from generation to generation.  Previously, a line has been drawn (in law, in some countries) between gene therapies that treat problems in somatic cells, like muscular disorders, and modifications that are heritable.  Though mitochondrial donation is aimed at preventing disease, some worry that it will open the door to other types of germline modifications and the creation of ‘designer babies.’  These concerns are misplaced for two reasons.

First, it is unclear why the somatic-germ cell distinction in gene therapy should be our primary criterion rather than a distinction between healing and enhancing.  If our problem with the creation of designer babies – which, given the current state of reproductive medicine, embryology, and genetics is a very long way off – has something to do with satisfying petty parental preferences, we should focus our efforts on preventing the use of powerful reproductive procedures for insufficiently serious purposes.  We should debate what counts as the prevention of a serious genetic condition and what counts as enhancement, not ban germline modifications that are aimed at eradicating disease and reducing suffering.

A second reason that the emphasis on germline modification is misplaced is that technology is already available to select, if not modify, embryo’s genes.  Pre-implantation genetic diagnosis (PGD) is a technique that is used to test embryo’s genes during in vitro fertilization, before deciding which embryos to transfer into the woman’s uterus.  PGD can be used to select against serious heritable diseases, but it can also be used to select for sex, milder disabilities such as deafness or dwarfism, and children who can serve as tissue donors for sick siblings.  The US has no laws or regulations on the acceptable usage of PGD, and elective sex selection is relatively common.[3]  It seems inconsistent to object to the use of mitochondrial donation to prevent serious diseases when a technique that uses selection, rather than modification, to choose non-medical characteristics of future generations is currently unregulated and in use.

Finally, if we decide that the germline criterion must continue to be respected, even when using genetic modification to prevent disease, we could require that mitochondrial donation only be used to create male embryos.  We could use sperm sorting to select male sperm which would be combined with a female pronuclei and an enucleated egg with healthy mitochondria.  Since mitochondria are inherited maternally, if only males are created, the mitochondrial DNA would not be passed on to the next generation.  Though many people find sex selection objectionable, there is precedent for performing sex selection for medical purposes.  For example, PGD is sometimes used to select female embryos to avoid passing on X-linked disorders.

It is understandable that new developments at the intersection of reproductive medicine and genetic technology raise concerns about our attitudes towards future generations, especially given the history of eugenics.  However, we should regard mitochondrial donation for what it is – a tool designed to allow mothers suffering from mitochondrial disorders to have children to whom they are genetically related – rather than focusing on potential future abuses in the general area of genetics and fertility.  Though it is important to exercise caution in the modification of heritable genes, the distinction between healing and enhancing should be our primary criterion for deciding what techniques are ethical and permissible.

Michelle Bayefsky is a senior at Yale University, where she was elected to Phi Beta Kappa and founded and serves as Editor-in-Chief of the Yale Bioethics Journal.  After working as a research assistant at the Yale Interdisciplinary Center for Bioethics for over two years, she will graduate in May with a B.A. in Ethics, Politics and Economics.



[1] Last week, the UK’s Human Fertilisation and Embryology Authority, the governmental body responsible for regulating reproductive medical care, released draft guidelines that would permit mitochondrial donation in humans. Children of mitochondrial donation could be born in the UK as early as next year. See Telegraph article here.
[2] Lewis, Ricki. "FDA Considers Mitochondrial DNA Replacement." Medscape Medical News. Medscape, 26 Feb. 2014. Web. 09 Mar. 2014. <http://www.medscape.com/viewarticle/821115>.
[3] Ginsburg, Elizabeth S., Valerie L. Baker, Catherine Racowsky, Ethan Wantman, James Goldfarb, and Judy E. Stern. "Use of Preimplantation Genetic Diagnosis and Preimplantation Genetic Screening in the United States: A Society for Assisted Reproductive Technology Writing Group Paper." Fertility and Sterility 96.4 (2011): 865-68.