Geneticization: An Interview with Abby Lippman on New Genetics

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By Fiona Miller

Abby Lippman, PhD, well-known feminist academic and activist, has done a great deal of thinking and writing about "new genetics". We had a conversation recently about women's health and new genetics.

I started our conversation by asking Abby what the term "new genetics" means.

Abby: It's not always clear what is "new."

Many technologies used in genetics today have been around for decades. What's new, perhaps, is the tremendously increased application of genetic screening and testing technologies.

Also, people are more aware of the many uses of genetics. It's more present in our lives. New, too, perhaps, is the tremendous extent to which "genetics" is taking precedence over how we see health and social problems, something I call geneticization.

Fiona: What about the impact on women of the "new genetics"? Are there different impacts for women? Is it important to think about women separately?

Abby: It's probably important to think of women separately in some instances, but not in all. Gender is perhaps not the central lens for critiquing genetics as a whole. Rather, we need a broad social justice critique.

Nonetheless, gender is crucial in thinking about the health and social practices and policies applying genetic technologies will allow. And, of course, there are some specific impacts on women, particularly with regard to reproduction which is the focus of most feminist discussions.

Obviously, women have more genetic testing because of prenatal diagnosis. Merely becoming pregnant often puts you into hands of a medical geneticist.

Women's bodies are the key points of access for reproductive technologies. A woman is exposed to drugs for [in-vitro fertilization], and it is her eggs that must be "harvested" for such things as pre- implantation diagnosis or for research.

There has been strong feminist critique in this area. But too often it's seen as a question of a woman's "choice" to use or not use some technology.

This is too simplistic.

We can only start to talk about choice, whether for prenatal diagnosis or other genetic tests, when all options are truly open to women. This means: that refusing prenatal testing is as accepted as accepting it; that those with disabilities are not subject to exclusion and discrimination; that environmental and occupational risks for developing a disorder of adult onset are identified as enthusiastically as are genetic "risks"; and so on.

Without these preconditions, we can't talk about choice.

The reality is that we've always been able to diagnose things long before we could treat them. And with prenatal diagnosis use expanding to include "susceptibility" [or risk], I fear women's "choices" will be limited further by the growing push from cost-containing governments to just avoid the problem (like encouraging women to abort when a problem or a "risk" is detected in the fetus).

But the gendered impacts on women of the "new genetics" are not just in reproduction.

Consider how women interact with medicine and health care: Women are more often care givers. Women will take care of those persons affected by genetic diseases more than men.

As more frequent users of the health system, women will enter into databases more often and could face greater employment and insurance discrimination than men [based on genetic test results].

DNA technology has been sold as really useful for women in sexual assault cases. But, as many feminists have said, the real issue for most women trying to take these cases to court is not "who done it?" but "did she consent?"

There's a certain irony and danger in thinking about the "new genetics" in terms of women's health today when "women's health" is such a sexy topic and all kinds of folks want to help "solve" our problems.

But their "help" seems to mean looking for "breast cancer genes," when we want studies on why this disease is increasing.

We find people scurrying to find genes predisposing us to heart attacks and strokes. Yet, where are the researchers who will focus on reducing our more immediate risks overwork and overload from our paid, unpaid and volunteer jobs?

Why do commentators only tell us we need to relax? And blame us for our stress and illness when life circumstances make relaxation impossible?

The major threats to women's health are poverty and violence. And there are no genes for being poor, and none for being violated. Genes are usually small players in women's ill health, so let's go after what really puts us at risk.

Fiona: Why and how does it matter that we are approaching the "new genetics" as an industrial strategy? How does that affect the impact of the new genetics?

Abby: I've always said that two E's motivate much of genetics: economics and eugenics.

Today, economics seems even more important than eugenics. There's lots of money to be made.

The government is committing money for health research, but I'm concerned because much of this money will be tied to commercial profit, to patenting new drugs, not into building a healthy society.

Commercial profit is a driving force for genetic research today, and it further promotes the view that everything is a genetic problem.

Fiona: What are your hopes and fears for women, facing the new genetics over next 10 20 years?

Abby: I guess I hope people get a realistic understanding of the tremendous limits of genetics in explaining why people are the way they are so they can assess this stuff really critically.

I hope there's enough strength in the women's community, and enough belief that this is not the way to go, so that we can mobilize and put brakes on geneticization. I hope we're not seduced by the allure of the genetic "quick fix."

My fears? I guess I fear it's too late I fear that the hoopla about genetics will make us fixate on the wrong problems.

Cloning, for example, has gotten everyone nervous because people are concerned about making carbon copies of other people. But that's not the issue. You can't make copies.

The problem is that if people want to use cloning it's probably because they want only certain kinds of offspring. So what happens to the child who didn't turn out the desired way? Send her back? And this commercialization of children is among my biggest fears. I think the "new genetics" builds on the consumer approach to children for those who can afford it without enough thought about the world we are creating in which these children will live.

I fear this world will be a very inhospitable place for people who are different, who are "genetically unenhanced" that we will think about people as ordered on demand.

So, in the end, I hope women will exert political clout and, at the least, determine if, and how, we can harness developments in genetics for our own ends instead of for those of folks who already have power and privilege. Can we use genetics to advance women? Social justice?

For example, could we require that for every government dollar spent for prenatal testing, $10, even $100, must be spent for the children and their families living with the condition? Could we require a company that develops a drug for something to put some of the drug money into addressing a social determinant of women's ill health?

We have to work to ensure that genetics doesn't take over all the paths for improving women's health.