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Advances in genomic research are likely to have a significant impact on women’s health over the next decade, as one important possible benefit of the Human Genome Project is individualized preventive medicine based on genetic risk. However, genomic discovery for the multi-factorial and common diseases which comprise the greatest public health burden is only now starting to become a reality. We currently do not know how the general population, or individuals at increased risk, might respond to susceptibility testing and feedback on genetic changes that confer low levels of risk. We are presently defining a proactive and trans-disciplinary research agenda for genetic susceptibility testing for multiple genetic changes (or multiplex testing), which will allow us to understand and anticipate the potential of this testing for important public health outcomes. We will be developing a multiplex test prototype and then conducting social and behavioral research studies to address the following aims: (1) gaining knowledge about the psychological, behavioral and social impact of multiplex testing, related counseling and intervention; (2) understanding the social, public policy, clinical and ethical challenges of obtaining informed consent and integrating testing and feedback into different settings; and (3) understanding how to increase the likelihood of equitable and broad-based dissemination of such testing. The multiplex test will likely include, among others, markers of susceptibility with specific importance to women’s health, such as markers for osteoporosis, and markers for other common diseases affecting many women, such as cardiovascular disease. We plan to examine the impact of multiplex testing on women’s health in general, and on the health of women at increased risk for common diseases.
A number of unique opportunities exist for fellows to conduct research within this initiative. Under the leadership of Dr. Kimberly Kaphingst, one line of research will be examining ways to optimize communication of information about multiplex genetic susceptibility testing and test results, which will likely pose considerable challenges. Fellows could collaborate on research related to issues of consent, such as how to communicate effectively the purpose of multiplex testing so that women can make informed decisions about participation. Research is also needed to evaluate how to communicate the results of multiplex testing to women with varying cultural backgrounds and literacy skills so that they understand the meaning of the tests. Being able to understand the test results and use the information to decrease risk of chronic disease will be of particular importance for populations of women already at increased risk due to other environmental factors. An additional important area for study is therefore the impact of multiplex test results on women’s behaviors, particularly whether the results can motivate women at increased risk for common disease to take steps to reduce their risk.
Under the leadership of Dr. Laura Koehly, another line of research will examine the role of social relationships in health promotion. For example, the multiplex test might include a marker for osteoporosis, a disease that impacts women more than men and for which risk can be reduced by regular weight-bearing exercise. Utilization of established support networks to facilitate a regular exercise program for women at risk for osteoporosis may be one avenue of intervention. The research will compare the efficacy of individualized prevention programs with social network- oriented prevention programs for those at increased risk. An additional area of study is the role of women as health promoters within their family networks. There is some evidence to suggest that women are highly influential in the decision-making processes within families and may play a special role in promoting beneficial health behaviors in the family. The conditions that the multiplex test will screen for tend to be linked to health promotion messages that focus on diet, exercise, smoking, and drinking behaviors. Research is needed that investigates the efficacy of utilizing influential women within the family context to encourage health promoting behaviors.
Under the leadership of Dr. McBride, research projects are underway related to using genetic susceptibility feedback to encourage adoption of health behavior changes. Several of these projects target cigarette smoking in young adult and minority populations. Cigarette smoking and lung cancer are serious women’s health problems.
