Our final session: Genetics and Public Policy

The last in our genetics series—What is Fair? Genetics and Public Policy—was a great conclusion to what has hopefully been an exciting year of discussing important issues related to the intersection of genetic information with society. The evening started with an 18-minute clip from filmmaker Maria Finitzo’s recent documentary, “Mapping Stem Cell Research: Terra Incognita.’ ( A side note for those who want to see the film in its entirety—www.chicagofilmfestival.org). The film uses the story of Dr. Jack Kessler, chair of neurology at Northwestern University, and his daughter Allison, a paraplegic following a skiing accident at 15, to highlight the questions and challenges of stem cell research.

Next, we heard from Dr. Lanie Friedman Ross of the University of Chicago. Dr. Ross used a series of clinical cases to challenge us to think about the pros and cons of genetic testing from the perspective of individuals, their families, and their communities. As her first case illustrated, even something as technically simply as looking at a single marker of genetic ancestry can raise many complex questions. What if such information revealed a previously unknown connection to a racial/ethnic group that we didn’t know we had? Would you want to know? Or not? Would that change the way you viewed yourself? As one student said to Dr. Ross, “Maybe not, but I don’t want to find out!” These questions are even harder to answer when we look to issues of disease that affect whole populations. What is the best way to screen newborns for genetic diseases when initial testing options may or may not detect all of the mutations that can cause a given disease? Both Illinois and Tennessee will be introducing new measures for cystic fibrosis screening, and the two states have chosen different plans. What is our obligation as members of society to learn about how our state (and federal) leaders arrive at their public health decisions?

And finally, the evening concluded with Dr. Vanessa Worthington Gamble who used the history of sickle cell anemia and the more recent development of BiDil, the first FDA-approved drug targeted at a specific racial group, to discuss the way in which genetic and medical information is shaped by social and historical issues. And, as the discussion session at the conclusion of the presentation illustrated, at least some people feel that BiDil is not so much a racially-targeted drug as it is a racially-marketed drug. So what do you think? Is it a good idea to use genetics to further conceptions of race? If not, how do we move away from this paradigm?

Please join us to keep last night’s conversation going! When it comes to genetics and public policy, what is fair?

-Amanda
IHC facilitator

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.

Genetics and Geneology: Tracing the Past

As this series on genetics has unfolded throughout the last year, we have heard many variations on a common theme answering the question, “Who am I?’ Tonight, our presenters addressed a different but still very much related question: “Where do I come from?” Our genetic make-up is uniquely our own, but the combination of genes that sets us apart as individuals is also a legacy from the thousands of people who are our ancestors. What does it mean to consider genetics in the context of geneology?

From our first panelist, Dr. Rick Kittles, we heard about efforts to use the technology behind DNA sequencing and genetic testing to identify the region of origin for African-Americans whose ancestors were brought to North America as slaves. Our second panelist, author Ronne Hartfield, shared stories from her critically-acclaimed memoir, Another Way Home, which details her mother’s life as a bi-racial American, the daughter of a white plantation owner and a mixed-race daughter of a former slave. Finally, Christopher Rabb concluded by discussing the social consequences of learning about one’s genetic origins, particularly in the setting of the African-American experience.

No matter what our heritage, questions about our origins and the impact this information can have on our identities are universal. Does it change what we think about ourselves if we learn through genetic testing that we do not, in fact, share ancestry with a particular racial group? What about the revelation—as is often the case for many African-Americans—that our ancestry is mixed, sometimes as the result of sexual violence many years in the past? Does finding out who are ancestors were and where they come from influence us today? How is the way that we view ourselves shaped by what we learn about not our own past but the past of those to whom we are related? The questions are endless and so are the possible answers. Let’s keep the conversation going!

Amanda
IHC facilitator

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

Genetics and History

On Wednesday, we heard much more than the history of genetics – we heard about genetics and history. Since Mendel’s pea experiements were rediscovered around 1900, genetics has played a not insubstantial role in shaping historical movements and social agendas. Genetics and history are interwoven and interdependent.

Dr. Gerald Allen of Washington University provided a necessarily brief but complete overview of the history of genetics while Dr. Patricia Heberer of the United States Holocaust Memorial Museum and Dr. Brent Waters of the Garrett Evangelical Theological Seminary teased out some of the historical significance and modern implications.

For instance, the eugenics programs of the early 20th century were in many ways founded in the tradition of Mendelian heredity and Darwinian evolution. Eugenics roughly translates from Greek as “good birth” and these programs thought to improve the human species by selective breeding. The eugenics argument is as follows, if many traits are hereditary (genetic) and some of these traits are undesirable, by preventing people with undesirable hereditary (genetic) traits from breeding, these traits will eventually disappear. To accomplish these goals, the eugenics movement committed atrocities not only in Nazi Germany (the Holocaust) but much closer to home. In the United States, compulsory sterilization of “undesirables” on the grounds of removing genetic heredity traits was widely employed in the early 20th century – over 60,000 “undesirables” were sterilized.

Given this significant impact on historical events and the clear dangers of certain avenues of thought regarding genetic purity and perfection, modern science and the modern public community must come to grips with the possible implications of advancements in genetic science. Genetics has been used to justify terrible acts in the past and only a concerned and attentive public can prevent the use of genetics as a justification for terrible acts in the present or the future.

How can we balance the benefits of genetics with the hazards of social stigma and discrimination? If we screen for cystic fibrosis, does that imply that we label people living with cystic fibrosis as “undesirables”? If we discover how to “design” smarter babies, will that inevitably lead to widespread use of the technology? And would that be different from trying to make our children smarter by reading to them and tutoring them in arithmetic?

These questions are complex and difficult, but they must be answered. Together we can create the world we want, using our advanced technology for good and preventing exploitation and the horrors of the past. What do you say? What is the world you would like to see?

Eric

IHC Facilitator

A Hard Knock Choice

 

One of the most intimate consequences of advancements in genetic science is the personal choice to get tested, or not. Often, the abstract, theoretical progress of science inhabits journals and laboratories beyond the realm of public knowledge (something, by the way, which we’re hoping to combat with this program). Parts of modern genetics like the philosophical debate over free will and fate, the futuristic genetics of science fiction, and the genetic modification of our foods may seem one step removed from personal experience – after all, few of us regularly debate philosophy over dinner, pilot starships, or consider modified crops while grocery shopping. Perhaps we should all do all these things a bit more (who doesn’t want to cruise in a private Enterprise?), but on the whole, nothing strikes home quite so much as being confronted with genetic science and a simple, yet gravely significant, yes/no decision. Should I get tested? Or not? There’s no middle ground.

 

Why would I want to know about my genes, anyways? One well-studied and broadly relevant example is the genetics of breast cancer. Studies in the early 1990’s found that women who inherited certain atypical genes might have a cumulative lifetime risk of breast cancer of over 90% while women with more normal genes faced a lifetime risk of only 10%. A particular mutation of a particular gene (in this case, BRCA1 or BRCA2) could mean a woman is 9 times more likely to suffer through a distressing and life-threatening condition. Now, if you knew about some genetic mutation that raised your risk for a specific medical condition, you could take steps to try to avert the potential misfortune. Some women who discover that they possess a BRCA1 or BRCA2 mutation have undergone double mastectomies (removal of both breasts) to fend off breast cancer.

 

But then again, maybe ignorance is bliss. If you knew you were slated by your genes to inevitably lose your ability to walk, stand, and speak after about the age of 40 (as in the genetic disorder Hutchinson’s disease), would you really want to know? From the moment you knew, would that throw a pall over the rest of your healthy years? And unfortunately, the effects of genetic testing are not just limited to your life. Since genes are inherited, testing yourself can also have implications for other family members. Finding a BRCA1 gene in your body could also tell your mother, sisters, daughters something about their bodies. If they don’t want to know, can you keep it a secret that they have a 90% chance of getting breast cancer?

 

Some other examples: if a husband and wife were tested and discovered that a child of theirs would possess a 25% chance of being born with cystic fibrosis, might this influence their decision to have children? If you knew you were at an increased risk for heart failure, might you work to offset some of that increased risk by careful management of diet and exercise?

The decision to have your genetic code closely examined for nicks and flaws is a heartrending one. It’s a choice that faces people like you and me every day, all across this country and all across the world. And it’s a choice that cannot be relegated to scientific journals or pensive philosophers – genetics up close and personal. Would you want to know?

Eric

IHC Facilitator

Pop genetics

Tonight we heard about genetics and popular culture. Genetics is unlike much of the rest of science in that it has become of considerable interest to the general public. The fascination with genetics, genomics, and the power of genetic engineering has only increased over the last half century, since Watson and Crick made their discovery in 1953. Since that time, the public’s views, hopes, and fears of genetics and its potentials have developed and presented themselves in art, television, movies, books, and in almost every aspect of popular culture.

We can see genetics everywhere, represented sometimes factually, but often with mistakes or just fantasy. These mistakes and misrepresentations, though not accurate, sound good and may be convincing to most of us who are not trained in genetics. Although fiction is just that, these misunderstandings can cause problems and bring up questions for science and medicine. Dr. Wayne Grody mentioned the increased demand for genetic evidence jurors sometimes display after seeing shows like CSI, in which genetic evidence is omnipresent and in good, useable condition. Unrealistic expectations like these, brought on by fiction, may have a great impact on how we perceive genetic technology.

Another complicating factor is the political nature of genetic questions. Dr. Priscilla Wald mentioned that at the heart of TV shows and movies is always narrative. Narrative has the ability to pose arguments or bias viewers based on the not-always-correct “facts” presented. These subtle influences may lead the us, the public, in making decisions or opinions about various genetic tests, treatments and technologies that are not supported by the facts.

It is undeniable that genetics is an important part of our society and it is likely that it will continue to be an important framework and tool for us in the future. With the increasing exposure of genetics to popular culture, we may see more and more questions arise. Although we may not always find the answers to these questions, discussing them will lead us to a better understanding of the issues and how we might anticipate and prevent problems in the future. That said, we invite you to continue the discussion on “What’s popular about genetics.”

Parth

IHC Facilitator

How Free? Well . . .

The four panelists at our last event more or less agreed that humans retain a great deal of free will in the face of genetic determinism. The question is, how much?

Humans can’t fly. Well, they can fly in planes or helicopters or a variety of other machines, but we can’t fly as birds do – just us and the clouds. Alright, that’s so obvious it’s trivial, so why do I bring it up? Because we have no free will over whether we fly. Humans can’t choose. We can’t say, “honey, I think I’ll just wing my way into work today, bypass all that nasty traffic.” We just can’t. Our genes tell us ‘no’.

On the other hand, humans at the grocery store can choose whether to purchase orange juice or apple juice. Our genes don’t really force us to pick one or other. That is, we’re free to choose. Free to pick up the apple, then change our mind, put it down and buy the orange. Your genes don’t interfere.

All of our behavior runs on a spectrum between these two extremes. Our genes most definitely determine some of our behavior while other behavior seems pretty open to free will and individual choice. But even many of those behaviors which generally seem heavily subject to free will still contain limits. Humans have free will over whether to run or walk to the market, but not absolute free will over how fast – some humans have a slight inherited superiority in running speed (remember, everything is genetic, the twin studies prove that). Humans have a range of ability with regards to how fast we run and, though we can train that ability and drastically improve our speed, there are genetic limits.

Another example, intelligence, is also partly inherited (using the term rather loosely to indicate general knowledge, exam scores, aptitude, etc.). Smarter parents tend to have smarter kids. But if smart kids don’t go to school, they still fail the exam.

Hard work and study, a product of our free choice to do so, can lift those of us who weren’t born quite as smart past those who were. But if the smartest kid on the block studies as hard as everyone else, chances are that he/she will score the best on the exam. We’re genetically limited in this way – people can’t be as intelligent as they want. You were born with a potential range of abilities and you can fulfill or ignore those abilities as you wish, but you can’t surpass your inborn potential. No matter how hard I try or how hard I will, I can’t be as smart as Einstein was. And that’s a limit that free will just can’t breach.

So what happens as science begins to uncover these limits? Humans can’t do everything, and there are many things of which some of us are genetically capable and some of us genetically incapable. And here’s the crux: say we perform genetic testing during in-vitro fertilization and discover that one embryo is genetically capable of slightly greater intelligence (not that this embryo necessarily will be of greater intelligence since “traditional” influences and free will have a significant effect, but that it has a greater potential to achieve superior intelligence). All else being equal, are we justified in choosing that embryo over all the others? Or is that discrimination?

Well, which is it? We are free to make this choice, but is it dscrimination of the worst sort or a thoughtful choice to enhance a child’s chances? The consequences of free will demand that we choose, we can’t just leave it to our genetic fate – after all, we’re human, and (mostly) free.

 

 

Eric