The Ethics of Our Inquiry: An Interview with Hank Greely

Sooner or later most scientists encounter a problem with ethical overtones. It could be as simple as what data to discard before submitting a paper or a question of authorship, but sometimes the quandary emerges from the very core of an experiment or in the application of newfound know-how to ‘‘advance’’ our society. When I was a post-doctoral fellow, for example, I developed a DNA-based diagnostic test for the X-linked disorder classic hemophilia. The test meant that it would be possible to genetically predict hemophilia in the fetus of a pregnant woman who was known to be a carrier of the disease. Immediately I was asked to apply the test to a real-life situation: an Australian woman was pregnant, and DNA from the fetus, known to be male with a 50–50 chance of inheriting hemophilia, was sent to me. Those few days in the lab, now 30 years ago, of digesting the DNA and running a Southern blot were extremely stressful. I knew the very life of this child depended on my result; time was pressing and I struggled with my own queasiness over the appropriateness of what was being asked of me. Was hemophilia so devastating that an affected fetus should be aborted? On the other hand, abortion was legal and available with no reason needed other than the choice of the woman herself. I soldiered on, greatly relieved to predict that the baby would be unaffected and even happier to learn later that, indeed, a healthy baby was born. My personal experience made me attuned to the many ethical issues that have arisen in the field of genetics in the years since then. Some current advances beg the question, ‘‘Should we do this, just because we can?’’ There are many aspects to consider in answering bioethical questions, including harm and benefit to individuals, born or unborn, their families, and society at large. For a broader discussion, I turned to Hank Greely (Image 1), a law professor who runs the Center for Law and the Biosciences at Stanford University. Greely previously worked on energy and gas law with an eye toward issues in global warming. He later became immersed in genetics questions when asked to serve on a panel discussion at Stanford and is now a member of the PLOS Genetics Editorial Board. We delved into his perspective after dinner, before a ‘‘live audience’’ at our recent Board meeting in San Francisco. With his engaging and gentle manner, his commentary softened the edges of some difficult issues and gave us a lot to chew on, starting with a disclaimer, after my introduction, that he isn’t really a bioethicist. Greely: I don’t think of myself as a bioethicist. I think of myself as a lawyer and law professor who works in bioethics. There is a dispute about whether bioethics is a field (an area) or a discipline. An area—I think of something like Latin American Studies. You’re an economist, you’re a literature person, you’re an anthropologist, you study Latin America. Whereas, philosophy is a discipline. Bioethics is an area with a bunch of interesting questions that people from different perspectives should approach. If I look at people who do what I think I do, they are people who have science backgrounds, medicine, anthropology, religious studies, law, sociology; I think there is even an economist. I view bioethics as a field of questions—moral, ethical, social, and legal questions—that come out of the incredible advances we are seeing in biology and their intersection with human society. The reason that I push back against ‘‘bioethicist’’ is that ethics sounds like a cop or like a priest. You go to heaven, you go to hell, you go to purgatory and with enough Ave Marias we get you out early. Some of the people who define themselves as ethicists think like that, some don’t. I think of myself differently. There are problems raised, tricky issues with pluses and minuses. Let’s try to figure out a way of keeping society and the advances in biology in tune with each other. Gitschier: I’d like you to just walk us through how someone who works on bioethical questions approaches them, because I suspect there is actually a logical system that is used. And I’ll just pick an example. Let’s say, and I know this isn’t true, there were a single gene that conferred height and if you get a particular allele you’ll be tall, and if you get a different allele you’ll be short. You realize that in society there are some advantages for your children to be taller, but you and your partner are height-challenged. You want to give your future child an advantage by inserting the ‘‘tall allele’’ into his or her genome. How would an ‘‘ethicist’’ analyze this? Do you just knee-jerk respond, ‘‘Oh that’s ridiculous?’’ Greely: Of course! [Laughter] Gitschier: Don’t you have a thought process? Greely: I can’t tell you what an ‘‘ethicist’’ would do. There are a lot of ethicists and they have lots of different approaches, and I think that is one of the good things about the field. You can try to figure out whose approaches you