Who am I? And who are you? As human beings there can be few more fundamental—and universal—questions that we ask of ourselves and of those around us. Last night at an event fittingly titled, “Who are You?” we were challenged to think about many aspects of identity, including the genetic basis for who we are and what we become. And, the challenge of integrating genetics into the other disciplines used to frame questions of identity was perhaps best illustrated by the statement of our second presenter, Dr. Timothy Murphy of the University of Illinois at Chicago as he began his remarks: “Identity is the story we tell about ourselves.”
From this perspective, it is clear that many factors can play a role in shaping what each of us see as the story of our lives. For some people, that story will include details related to a disease with a clear genetic basis. Two of the examples mentioned yesterday—cystic fibrosis and sickle cell anemia—have a very clear, and a very well-understood genetic basis. Patients with these conditions (and likely their families and friends) see a story of life shaped by genes. But as soon as we move away from these classic examples of how genetics influences life, the picture becomes much more complicated. Many of us do not choose to tell the stories of our lives using genetics, and when our complexities are re-interpreted from a strictly biological framework, information can be lost even as new information is gained. What happens to our view of ourselves when we consider a disease model such as breast cancer or heart disease in which there are genetic factors that contribute to the overall picture but not independently of the interplay between environment and genetics? What about aspects of life that are not classified by disease and health, but are rather a universal part of the human experience, questions of race and ethnicity and even sexuality? As we saw yesterday, a discussion of these topics in the context of genetics raises many more questions than can be answered. How much of who we are is truly determined by our genes? And how do we use that information to define not only our own place within the world but also the way in which we relate to others? Are our genes the only things that define the people that we spend a lifetime becoming?
Many interesting and provocative ideas were presented yesterday, and since it would be impossible for a two-hour presentation to allow time to discuss all of them, let’s continue the conversation here! Dr. Sloan Williams raised questions of the social complexity associated with identifying genes for disease traits and tracing genetic ancestry. Dr. Timothy Murphy addressed the complexity of genetics, identity, and sexuality. Both presentations provide a foundation for limitless discussion. What do you think: does the question, “Who am I?” have to include a genetic component?
Amanda
IHC facilitator
April 20, 2007 at 10:55 am
During Wednesday night’s program “Who am I: Genetics and Identity”, Dr. Williams touched briefly on the notion of ethics and confidentiality in research)Hemings/Jefferson case study), and several audience questions raised the issue of genetic confidentiality. I was surprised that none of the panelists mentioned a Federal bill that is currently being considered by Congress. The Genetic Information Non-Discrimination Act of 2007 (GINA) was recently voted on and passed by the Senate, and is now under review in the House of Representatives. This Act will help continue genetic research to potentially revolutionize health care and save lives, and protect the privacy of individuals participating in this research. GINA will establish basic protections that will enable and encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies, without the fear that this information will be misused or abused. It is estimated that each of us have on average 6-8 disease producing genetic mutations, and anywhere from 10-40 gene mutations on the whole. Although most of us have probably never had a genetic test or plan to have one anytime soon, the rapidly developing field of genetics and health care could change our opinions about, or even our need for genetic testing in the very near future. It is therefore critical that people be aware of the fact that their genetic identity is private, and soon to be protected in ways that other aspects of identity already are.
April 22, 2007 at 12:22 pm
Thank you for the comments, Greg. GINA will certainly advance the privacy of genetic information and allow people to participate in genetic research while maintaining the privacy of their genetic information.
Another interested subject Dr. Williams touched on also revolves around this issue of genetic privacy. She mentioned that in the published report of the Jefferson/Hemings case, genetic research found that one of the children in the study had a paternity different from what they expected. This finding as irrelevant to the study, but was published. This shows something about genetics that is fundamentally different from other kinds of personal information – that genetic information can reveal data about the person who’s genetic information it is, but also about that person’s relatives.
Here’s a case example: Imagine a young man learns that the disease his father died of may have a genetic component. He tells his siblings about this and mentions that there is a genetic test that could show them if they carry a predisposition to this same disease. His siblings are strongly opposed to the idea and refuse to consider genetic testing. The young man decides that he still wants to get tested, and does so. Now imagine the genetics of the disease are such that if he carries the genetic predisposition, his siblings will as well. If he finds that he does have the genetic abnormality, should he reveal this information to his siblings? They’ve indicated that they don’t want this information, but what if the man simply reveals his own findings – this would, to anyone who knows about the disease, reveal that his siblings also carry the marker. What if there is a cure for the disease, if caught early?
The limits and boundaries of private genetic information and how to properly protect confidential information is still a complex and important topic for conversation.
Parth
IHC Facilitator