Feature

Though few psychologists look to the National Human Genome Research Institute (NHGRI) as a prime place to get funding, its director, Francis Collins, would like to change that.

He's the first to admit that his institute concentrates more on biotechnology than behavior--its goal is to map the entire human genetic code and, in the process, develop powerful tools with which to sequence DNA and tease apart gene function. But he's fervent about the need to investigate the behavioral and social consequences of unraveling human genetics. And that's where psychologists come in. As mandated by Congress, NHGRI reserves at least 5 percent of its budget for its Ethical, Legal and Social Implications (ELSI) program, which funds behavioral and social science research into the societal and psychological consequences of mapping the human genome.

Collins spoke with the Monitor about funding of behavioral and social science and opportunities he sees for both research and clinical psychologists.

Q. What are the questions you would most like to see behavioral and social scientists address?

A. One area is the notion that people will alter their health behaviors after learning about their future risk of illness. Probably 10 years from now, fairly simple DNA testing will give us the chance to get a report card about which illnesses we are at higher or lower risk for. The assumption is that people will use the information to reduce their risk of disease through lifestyle changes, medical surveillance, diet or whatever.

However, given the fact that we have not always seen health behaviors change when there was strong evidence that they should--smoking for example--one worries that this kind of scenario may be naïve and that people will ignore the information and go their merry way without changing a thing. We are in urgent need of getting more information about that and learning how factors such as mindset, socio-economic status and ethnic group influence the decision to utilize genetic information in a positive way. What are the factors that feed into the way genetics is or is not well received as part of their own program of staying well?

Q. Anything else?

A. There are many other questions we need answered. How will the information be utilized in the judicial system? How will it affect our view of ourselves as we begin to learn more and more about the biological basis of similarities as well as differences and face up to the fact that the way we currently categorize people based on skin color or other visible features is really not well substantiated by scientific evidence? It's becoming very clear that we will not end up in a circumstance where you can draw scientifically justified boundaries around any particular group and say they're different.

Q. Your institute has been involved in trying to get health-related professional organizations involved in educating their members about genetics. Can you explain?

A. This program addresses the other part of our vision of the future that might not happen if we don't work at it. Once we have the ability to make predictions about a person's future health, who will be the health-care professionals who are sufficiently well trained to interpret the results, help patients interpret what they mean and make logical choices about what action to take?

Right now most health-care professionals--physicians, nurses, social workers, psychologists--are completely unprepared to integrate genetic information into the way that they go through an encounter with someone seeking information. We desperately need to bring all these folks into a new era of genetic literacy as fast as we can. So we've founded the National Coalition for Health Professional Education in Genetics, which is attempting in a very interdisciplinary way to get into the hands of the interested folks basic information about genetics and genetic testing. It will allow them to begin to become reasonable practitioners of this new brand of genetic medicine over the next five to 10 years.

Q. Would the coalition's efforts include encouraging collaborations between medical and mental health professionals?

A. Absolutely. That will be a real growth area. A lot of what we're talking about here is information exchange and counseling about the consequences of that information--helping people think through various decisions, helping people deal with the impact, both positive and negative, of learning about their own specific set of genetic flaws and trying to encourage the positive utilization of genetic information.

I don't foresee people without significant counseling skills being very good at this. So a partnership between people with experience in mental health and counseling and more medically oriented folks would be extremely useful.

Q. Your main avenue for funding behavioral and social science research is through the ELSI program, but do you see any funding opportunities down the road for behavioral researchers wanting to discover genes related to behavioral traits?

A. Our extramural program is nondisease-specific and nontrait-specific. It's more a way to develop power tools for deciphering the human genome. Our intramural program, which doesn't give grants, is more applied, using the genetic tools to look at gene function. And it's had some forays into understanding behavior.

But that's a very modest component of our overall portfolio. Instead, there's a huge amount of interest in that type of approach from some of the other institutes, particularly the National Institute of Mental Health and the National Institute of Neurological Disorders and Stroke. They are two of our biggest fans as far as their interest in using the tools of genomics. They are hungry for us to hand all these things through the transom so they can put them to good use.