Alex Capron explores ethical conundrums of eugenics and genomics

We need to recognize the similarities between twentieth-century eugenics and the genomics of today, and to learn from them.

Fundamentally, eugenics is the use of genetic knowledge and techniques in deciding about which people will exist with what set of genes. And that covers many practices in modern genetic and reproductive technologies, such as embryonic selection, as well as any future endeavours to redesign humans genetically.

I see in the current version of eugenics too many of the characteristics of the old. And I fear not only the harm this may bring in terms of damaging practices that are adopted, but also the potentially good results from other uses of genetic science and medicine that may be derailed or derided because of fears over the direction that the uses of genetics in reproduction are taking us.

I can identify five such characteristics.

Bad science
In the nineteenth century, Galton thought that a sure measure of natural ability could be found by studying the leading families which produced eminent jurists, statesmen, scientists, military leaders and artists. In the twenty-first century, we have scientific announcements of the discovery of a gene for X, Y or Z. Both reinforce a crude genetic determinism.

Today, genetics is increasingly being invoked in policy and legal settings to seek causal explanations of complex behaviours such as juvenile delinquency, criminality and addiction.

Racialist medicine without racism?
The notion that race is culturally constructed is supported convincingly by genomics, which has revealed that genetic variation within traditional racial groups is greater than that between them.

However, race remains a useful tool in genetics, where it can serve as an indicator for the presence of genetically influenced conditions that are expressed in certain populations, allowing treatments to be tailored and tests to be directed to certain racial groups.

Making use of this in medicine raises dilemmas. Should we treat everyone in the population the same, for example, and therefore forego providing a test for a rare genetic disease when the test wouldn’t provide cost-beneficial results? Or should we provide the test only to members of a group in which the disease occurs frequently enough to justify that testing? And might efforts to recruit people in the target population to come forward for testing serve to stigmatise racially identifiable groups?

Reluctant support
The eugenic restriction of reproductive liberties of a minority has, historically, been justified in terms of the benefits for wider society. Those justifications may be genetic or economic – to prevent the birth of children who would be a burden to the state, for example, or who could contribute little in terms of productive labour. How does that compare with the situation now?

If people with a condition that is causally associated with a particular gene require various forms of social support to experience lives that are full of well-being, then the decision to take a eugenic approach may simply reflect the reluctance of society to make the support available, or the inability of these people or their families to command such resources.

Threat to reproductive freedom
Our current system of so-called non¬directive genetic counselling comprises impartial advice provided by experts to inform parents’ decisions about whether to reproduce, or to terminate a pregnancy, in the light of genetic test results. But at what point does non-directive counselling become active discouragement?

State intervention
Here we find an important difference between then and now.

Today, the problem is less that states are using their power to promote eugenics, and more that they do not use their power to prevent it. Part of the problem is that state intervention could itself be seen as too intrusive and to detract from individuals' reproductive freedom. And how would it intervene anyway? Would the intervention be to prevent the birth of deaf children or to protect the right of parents to have deaf children? One wonders whether possession of the genes found to correlate statistically with obesity could count as such a genetic problem.

Genomics has, potentially, a bright future. But society must have an awareness of the dark history of genetics if it is to successfully steer it towards that goal. That history provides stark reminders of the limitations of science, how science can disregard those limits, and what can happen when it does.

This is a shortened version of a public lecture given by Professor Capron to the Economic and Social Research Council Genomics Policy and Research Forum at the University of Edinburgh

Professor Alex Capron holds the Scott H. Bice Chair in Healthcare Law, Policy and Ethics at the University of Southern California and was, until recently, Director of Ethics, Trade, Human Rights and Health Law at the World Health Organization