Jennifer Hochschild

In a nutshell

Knowledgeable observers suggest that, just as physics shaped the twentieth century for both good (space flight) and ill (atomic bombs), so biology will shape the twenty-first century. As with physics in the 1920s, we in the 2020s literally cannot envision the impacts of biological innovation over the next decades. But we can confidently predict that some impacts will benefit, and some will harm, humankind or parts of it. We can also predict that people will vary as to whether a given impact is beneficial or harmful. Genomic Politics maps the transformation now being created by three components of this biological revolution, all in genomic science: individual ancestry testing, use of DNA in the criminal justice system to help determine guilt or innocence, and medical use to understand, prescribe for, and eventually eliminate human genetic diseases.

Unlike most non-biologists who write about genomics, I do not seek to persuade readers that social uses of genomics will help or hurt them. My goal lies at a more “meta”-level – to explain how people come to different views of genomics’ innovations, why people hold one or another view, and what the societal and policy consequences will be of accepting one or another stance. (I reserve my own view for the end of the book, and even there I tread lightly.)

Genomic Politics explores four stances toward each of the three genomics innovations. Enthusiasts believe genetic influence on human phenotypes to be strong (though few are determinists), and they believe that genomic science is overall a force for good. They are, paradigmatically, genomic scientists. Skeptics also perceive genetic influence on human phenotypes to be strong, but in contrast to Enthusiasts, they believe that genomic science may generate more harm than good. They are, perhaps, fatalists. The Hopeful and Rejectors both perceive genetic influence on human phenotypes to be weak; the Hopeful see that fact as an invitation to social activism in order to solve social problems, while Rejectors proclaim a pox on both the houses of genomic science and social activism.

Using this simple typology, I investigate how occupants of each cell encourage or contest genomics’ use in, respectively, self-understanding, the courts, and health care. I examine how experts, public officials, the general public, and specific groups (e.g. African Americans, police, or disability advocates) use or castigate genomics, and how all of this might develop. I also discuss the concrete policies and practices in each of the three arenas, and conclude by explaining why I am a cautious Enthusiast.

The wide angle

A great deal of activity, ranging from public policies to address poverty or climate change, to individual choices about whether to change a job or marry one’s partner, depends on how risk averse or risk acceptant one is or the policy should be. This is a psychological, moral, political, and practical conundrum, with all aspects tightly entwined. Should a state’s government shut schools during a pandemic in order to do everything possible to prevent serious illness and death, or should the government keep schools open (with appropriate cautions) in order to promote student learning as much as possible? Should the FBI help states to develop a DNA database of criminal suspects with the goal of identifying and convicting as many criminals as possible, or is a criminal justice DNA database a new form of Jim Crow surveillance that threatens everyone’s privacy and tightens the state’s grip on disadvantaged and powerless people of color? Should I undergo genetic testing and gene therapy of my fetus in the hopes of curing a genetic disease before the baby is born, or is prenatal genetics a recipe for parental anxiety, an unintended encouragement to abortion, or an insult to people with inherited disabilities?

These and similar questions are accompanied by an equally vexing set: who should decide? Should individual parents, the local community, or the state decide about schooling in a pandemic? Should parents, their doctor, or the society as a whole decide on the acceptable extent of prenatal genetic testing? Decisions about a forensic DNA database are different, since the policy is all or nothing; it makes no sense to say that some suspects’ DNA should be sampled but not that of others. So should this stark choice be made by judges, a popular referendum, or expert criminologists?

Genomic Politics explores these vexed issues through its three cases of ancestry testing, forensic DNA databases, and medical science’s exploration of genetic disease. The issues are intrinsically important, and their development will affect everything from identity to crime to health. They are also great vehicles for investigating details of policy, and personal risk acceptance or aversion.

A few findings to whet readers’ appetite: No genomics policy or practice that I have examined has a partisan or ideological valence, even in this era where everything seems to be politicized. Majorities of even Democrats and self-defined liberals, and a plurality of African Americans, endorse use of forensic DNA databases; every public official who has spoken on the subject enthuses about them. But the lack of politicization does not imply universal acceptance. In my surveys, fewer than 20 percent of the American public trust democratic processes (e.g. community forums or elected officials) to set policy on gene therapy; only a third trust religious or economic leaders. Survey respondents look askance even at doctors and families; the most popular response was “a little trust” or “no trust” to all proffered decision-makers.

Perhaps most important, splits between precautionary and pro-active people and policies are much greater and less amenable to compromise than are splits between people and policies that disagree about the amount of genetic impact. I learned that in a tense conference about a drug for congestive heart failure that had recently been approved by the FDA for prescription to only self-defined African Americans. Scholars, disproportionately white, were horrified by the implication that “race” has a medically relevant genetic component. Practitioners, disproportionately Black, knew all about race-based eugenics but wanted an effective drug for their patients. The two sides of the room, who mostly shared strong liberal and egalitarian values, stared at each other in consternation. What was going on? I wanted to know.

In sum, genomics innovations are fast-moving, controversial, and significant on their own terms. They are also an excellent vehicle for pondering personal, institutional, and moral dilemmas of how to balance protection against and acceptance of risk in innovations. Finally, new genomic technologies present a stark case for exploring who should make risky decisions.

A close-up

Readers who seek a taste of Genomic Politics might want to read chapter 1 (which presents the controversies around each case and the typology for understanding the controversies) and chapter 8 (which explores experts’ and the lay public’s views about who ought to make and who should not make genomics decisions, and why).

Readers might next read chapter 9, which lays out several plausible futures about how the tension between risk acceptance and risk aversion, and the orthogonal tension between promoting and rejecting use of genomics in policy and personal decisions, could play out in governmental decision-making. Chapter 9 also lifts the veil over my own views.

Finally, if readers really want a close-up, chapters 4 and 5 present the four stances (Enthusiasm, Skepticism, Hope, and Rejection) for each of the three genomics cases.

Lastly

I hope readers take away three messages. First, as I noted at the beginning of these comments, humans are just beginning to learn about and come to grips with the potentially vast impact of biological science that is yet to come in this century. Biology may shape everything from climate change to the survival of species, the criminal justice system, the nature of war, the possibility of privacy, and the capacity to enhance traits and cure diseases. Some changes will benefit all or some people; some will harm all or some people; some will benefit some and harm others.

Second, governance of science and technology will be as controversial and difficult as the actual use of that science and technology. People disagree on who should govern, or even whether anyone should govern individuals’ choices about the use of technology. They also disagree (not necessarily in partisan ways) about whether policies should tilt toward promoting benefits at the cost of risks or protection from risks at the cost of losing benefits. There is no clearly correct answer to the governance question, or clear pathway to arrive at a correct answer to the governance question.

Finally, genomics is fascinating. I am not a scientist, but I became enamored with the people working to promote or stop genomics innovations and with the innovations themselves. Ending with a cliché is not ideal, but in this case the old saw about “the more you know, the more you want to know more” is apt. I hope readers find these issues and actors as mesmerizing as I do.