Genetics and Privacy

Genetic privacy has become a hot topic of late, and rightly so as genetics have revealed some important secrets about health, heredity, and personal traits. Tonight we heard about the issues surrounding genetic privacy in law, medicine, research, history, and art.

Lori Andrews discussed the laws surrounding genetic discrimination and related issues. Who should be able to access genetic information? For what purpose? These issues are more than just theoretical, as Chicago sports fans know the issue of genetic testing and employment has had a direct impact on the roster of the Chicago Bulls basketball team. Genetics, which many consider to carry absolute truth, brings questions of privacy strongly into the public arena.

Dr. William Catalona, professor of urology, spoke about ownership of genetic material and information. The profits at stake in genetic medicine, he pointed out, are quite substantial and may lead to strong legal disputes about genetic property rights that may hinder research.

Russell Lewis, historian, discussed the dilemmas surrounding biohistorial research on President Lincoln. Despite the number of artifacts collected that may contain Lincoln’s genetic material, historians must balance the potential gains from such research against the destruction of those artifacts. Further, the research should offer some benefit to society beyond just a desire to know more about a celebrity figure.

Finally, artist Larry Miller presented some of his genetics-related work, such as his Genome Copyright form for “Original Humans” and portraits composed of DNA on a gel. As we are attempting to with the future perfect series, Miller increased public awareness of genetic issues through his art.

All these speakers highlighted the issues of genetic privacy from various fields. The questions they posed: who should own genetic information? Who should have access to genetic information? Who ought to profit from research using genetic information? These questions do not have easy answers and they may not be resolved in the near future. They are, however, already being discussed and will likely have major implications in several aspects of our lives.

Who Gets To Live?

As our understanding of genetic technology increases, so does the number of ethical questions about its use. One of the most controversial of these questions is: How should we use genetic testing technology? This question has sparked heated debate, most notably by disability rights groups, who claim that allowing pre-natal genetic testing encourages the marginalization of people living with disabilities and furthers the negative stereotype. Opponents argue that parents should be free to get the testing and decide for themselves. The discussion continues in our government and in the media.

Disability rights advocates argue that by allowing such testing (and allowing expecting mothers to abort fetuses that will be disabled) the medical community is sending a hurtful message to people with disabilities – that there lives are not worth living. Some of these groups feel that such testing should be abolished.

Opponents of this view argue that parents in this country have the right to abort children for whatever reason they wish, or no reason at all – thus, there should not be a higher standard for parents who want to abort a fetus that will be disabled.

In this evening’s discussion, we heard from a genetic counselor, a physician who sits on a genetics committee, a physician who works with disabled patients, a professor who studies disability, and a philosopher. Each of these individuals represents a field that can inform this discussion.

How should we use genetic technology? What kind of limits should be placed on it? This science has great potential, but directing its use is not an easy task. How do you weigh in on this debate, and why? We’d love to hear from you.

Parth,

IHC Facilitator

Genetics and Race

How are race and genetics related? This short but remarkably complex question was addressed in tonight’s event moderated by Harry Porterfield with panelists: Troy Duster, Ph.D. of University of California Berkeley; Michele Goodwin, JD , LLM of DePaul College of Law; and Blase Polite, M.D. or the University of Chicago.

Troy Duster described the progress and pitfalls of genetic testing (especially concerning ancestry). The 3 billion nucleotides of the human genetic code are 99.9% identical among all people. However, that last 0.1% means there are about 3 million differences in each persons DNA that account for all our human diversity. And some of these 3 million differences occur more frequently in some races than others, indicating that race probably has some genetic component.

Michele Goodwin discussed the trials faced by African American’s in many contemporary and historical issues. Racial and ethnic groups have been discriminated both for and against, and these institutions continue to affect our (and society’s) thinking about race. Race and genetics is no exception.

Blase Polite provided some excellent background on heredity and the genetic basis of cancer. A key distinction is that all cancers are genetic but not necessarily hereditary – genes can be changed by events in our environments after birth (radiation and some chemicals, for example). Dr. Polite also demonstrated that some of the racial differences in breast cancer that may be explainable with genetic model.

What does all this mean? It seems clear now that there are some genetic differences between ethnic groups. Skin color, for instance, is hereditary – the information for skin color must be encoded in and transmitted through genes. But there are also more subtle differences such as a higher frequency of genetic disease (for example, higher frequency of cystic fibrosis in some Jewish populations and sickle cell anemia in many ethnic groups originating around the equator). Subtler still are minute genetic differences that may be entirely irrelevant or with consequences we are not aware of. Does our conception of race change if there are genetic components? What are some of the possible ramifications (testing, profiling, insurance, etc.)?

An essential goal of this series is thinking about how we should prepare or respond to scientific discoveries. Science will continue to discover more and more about the relationship between race and genetics. These discoveries are not bad or evil; indeed, they hold great potential for saving lives and reducing disparities. But there are, of course, possible problems. How should we respond?

Eric

IHC Facilitator

Who Am I?

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

What the Chicago Reader is saying…

The Future Perfect series–and last week’s event on GMOs in particular–has been blogged by a reporter for the Chicago Reader. Here’s what Harold Henderson has to say (and his site can be accessed at:
http://blogs.chicagoreader.com/daily-harold/2006/11/02/peek-gene-factory/)

“”The history of genetically modified foods doesn’t feature a history of testing appropriate to their innovative character.” That’s Vivian Weil, longtime head of the Center for the Study of Ethics in the Professions at the Illinois Institute of Technology. She and University of Chicago geneticist Jocelyn Malamy did a thorough job of setting the table at the Illinois Humanities Council’s genetics program last Saturday, identifying and distinguishing the issues around genetically modified foods, but that didn’t leave the audience much time to eat. (IHC has an associated blog with some discussion.)

Malamy’s key point is that not all GM plants pose the same questions. “Round-Up Ready” transgenic plants are resistant to herbicide, so that farmers can control weeds by spraying more and cultivating less. They pose questions of environmental damage from added chemical use. “Bt” transgenic plants have a bacterial gene inserted that makes them toxic to European corn borers; the issue is whether they might poison desirable insects or cause Bt-resistant borers to evolve over time.

Malamy also ran down questions (and her answers) that apply to both current GM plants and future ones:

Is the process of adding or altering genes harmful to consumers? (No.)

Could specific transgenes be toxic? (Maybe.)

Can transgenic pollen spread to other crops or wild relatives? (Yes.)

Could specific transgenic plants be detrimental to the environment? (Potentially.)

Other food issues don’t apply specifically to GM crops but are problems with industrial farming in general: the use of pesticides, growing monocultures of the same crop, hybrid seeds that farmers can’t save, and agribusinesses’ aggressive enforcement of their patent claims.

Both GM plants and GM foods should be tested for safety, said Malamy. “I would advocate activism to make sure agencies are in place” to do this job properly, she added.

The panelists even had a little philosophical dust-up about how to put GM in context. Moderator Bruce Kraig of Roosevelt University and the Culinary Historians of Chicago began the day by saying, “Genetic manipulation began millennia ago,” implying that GM foods are not significantly different from strains of cattle selectively bred over generations for milk or beef production. Malamy qualified this, saying, “There are limits to breeding. You can’t breed for resistance to the corn borer, because no such trait exists in the plant to start with. But other plants have it.” And Weil was equally hesitant: “This is an innovation in breeding. There is a break — now we have the ability to bring genes from sources not previously available.”

In a sentence: genetic modification isn’t the end of the world, but it’s definitely not business as usual, and so far the government hasn’t regulated it well.”

This question of government regulation is a challenging one! Any thoughts on what the government could or should do? Let’s keep the discussion from last Saturday moving–feel free to comment whether you were able to attend or not.

Amanda
IHC Blog Facilitator