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Anne Foerst: implications of sequencing the human genome

March 26, 2000
Web posted at: 12:13 p.m. EDT

(CNN)- In joint statements made June 26, the publicly-funded Human Genome Project and private company Celera Genomics announced the sequencing of the human genome. Decoding the genetic makeup of humans is expected to revolutionize medicine. The findings also have major social implications, especially in determining who should have access to genetic information.

After appearing on CNN’s Talkback Live, Anne Foerst, a research scientist at MIT's Artificial Intelligence Laboratory, joined the Health/News Chat to discuss the religious and technological implications of sequencing the human genome. Foerst is also a research associate at the Center for the Studies of Values in Public Life at Harvard Divinity School and director of The Center for Theology and the Natural Sciences.

Chat Moderator: Welcome to the CNN chat room, Anne Foerst.

Anne Foerst: Hi! Glad to be here!

Chat Moderator: What concerns are you hearing from people about the consequences of sequencing the genetic code?

Anne Foerst: A lot of people are afraid of designer babies. The question of what makes an ideal human being arises -- what would be the standards to measure a perfect human? That, of course, leads to the question of acceptance of a person. Will I be accepted only when I'm perfect, or can I be accepted if I have Trisomy 21 (Down syndrome) because my parents decided not to have a genetic test?

These are the crucial questions of the whole genetic research. And, of course, as a consequence of that, who actually has the power to decide what it means to be "normal"?

Chat Moderator: As genetic engineering is able to treat more illnesses, will it become increasingly difficult, if not impossible, for people to resist such medical treatment on religious grounds, especially for their children, as is now the case with blood transfusions?

Anne Foerst: This is actually immediately related to the previous question. Scientists claim that they can heal so many diseases, but do we actually want to have all those diseases cured? When we think about certain mental impairments such as depression or bipolarity, which seem to have a genetic component, do we actually want to get rid of them, even if people with these illnesses are often enormously creative? For instance Mozart has been diagnosed to be very likely bipolar.

Again, it raises the question, "What is normality?" I think it's in the hands of people in society to not give scientists all the power, but to become actively informed and involved in a societal discourse about these matters.

Question from Celie-CNN: Dr. Foerst, has any thought been given to the prospect that diseases might mutate from those we currently recognize and understand, making the search for new cures more difficult?

Anne Foerst: I'm not a genome specialist. I’m an ethicist concerning those issues. My take is that right now, the 90 percent mapping of the genome has no impact whatsoever on medical treatments because there are actually very, very few and rare diseases which are linked to one singular gene. Most diseases are far more complex than that.

As for right now, we have no way to explain or even understand the complexity of the genetic interactions and the interactions between the genotype and the outside world. Therefore, we are not even now close to having any impact on medicine right now.

Chat Moderator: How can this genetic knowledge affect people when they apply for health insurance?

Anne Foerst: This is another problem. It's not so much just the privacy issue, but it's also the question of when the parents don't want to have their embryo screened, will health insurance pay for diseases? My take on that is that they absolutely should. From an ethical perspective, they should. This brings us back to the question of normality and standards for that, and it also brings us back to the question of person-hood. In my opinion, health care should be valid for all persons. There should be no monetary concern about not helping a genetically sick person.

The other issue closely related to that is how about if employers or potential employers know the genetic problems of employees? Might that mean that people who tend to be sick more often than others won't be able to find a job? Those are all questions we have to solve in a societal discourse. Scientists alone do not have the competence to discuss those questions alone.

Question from Float: How do you think this human genome project will affect our religious beliefs as we gain more control seemingly over the design and creation of human life?

Anne Foerst: Well, as I said in the show, I do not believe in design. For me, the metaphor or, in my sense, a statement of faith, is that since God has created the world, and especially us humans, in God's image, we got the gift of dignity. We have intrinsic value no matter what we do, what we produce, no matter how "useful" we are. Even if we have decoded now, or mapped, 90 percent of the genome, it doesn't tell us anything about the dignity of human beings.

The danger I see in some of the overstated claims is that people will say, "Oh, humans are nothing but their genes," and that they give science universal power over who they are and say that religion has no place. But I think that only we all together can come to an understanding of what it means to be a person.

So I think that Christians or other religions that believe in a God, a creator God, should see the complexity of the genes as something just wonderful and exciting, but shouldn't let a scientific theory have impact on what they believe it means to have dignity.

Question from Celie-CNN: Is there an active push now to pursue the ethical issues before the research impacts are fully determined?

Anne Foerst: I think the pressure for ethical evaluation comes from the media and society. I am very, very happy that this pressure is there, because it puts the Human Genome Project into a context. It actually demands for a societal discourse which we need, urgently. But I don't see that the scientists themselves pressure for ethical evaluation.

Chat Moderator: One of our audience members, MaryG, raised the issue of only the rich having access to gene therapy or genetic engineering. Is this a real danger -- that the poor will not have access to possible lifesaving benefits of gene therapy?

Anne Foerst: Absolutely. Absolutely. Again, this is not something that is inherent in the decoding of the genome, but is one of those things that can happen without ethical considerations about the consequences of research.

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A lot of very good medical tools are very exclusively used, like CAT scan or other brain analysis, because the machines are so expensive. Again, here comes the question for the insurance industry and our influences on health insurance. Is not every human being, no matter how much money he has, a person who deserves the same treatment? I would say so, but our society has to fight for that.

Chat Moderator: Do you have any final thoughts for us?

Anne Foerst: I think that there is a strong response, and I think it's great that CNN does this in a discussion friendly format. I think that the great response gives me hope that more and more people will attend the dialogue.

I will give you advice: get informed. Don't believe all the hype and overstatements. Become an active part of the discourse without being judgmental, saying things like "This is wrong" or "Religion is bad." Try to understand all the sides and see what you can contribute, what we all can contribute.

Chat Moderator: Thank you for joining us today, Anne Foerst, to discuss the religious and technological implications for genetic sequencing.

Anne Foerst: Thank you for the great questions! Good-bye!