According to a new report from the Institute of Medicine, researchers need to engage more lesbian, gay, bisexual and transgendered people in health studies.   The scarcity of research (among this population) yields an incomplete picture of LGBT health status and needs, which is further fragmented by the tendency to treat sexual and gender minorities as a single homogeneous group.

We have only recently  learned that race and sex play an important role in health status.      "It was only when researchers made deliberate efforts to engage women and racial and ethnic minorities in studies that we discovered differences in how some diseases occur in and affect specific populations.   Routine collection of information on race and ethnicity has expanded our understanding of conditions that are more prevalent among various groups or that affect them differently.   We should strive for the same attention to and engagement of sexual and gender minorities in health research," said Robert Graham, professor of family medicine at U. of Cincinnati College of Medicine in Ohio and chair of the committee issuing the report.

Because LGBT individuals make up a minority of the population, researchers face challenges in recruiting sufficient numbers of these individuals to yield meaningful data.   Stigma experienced by gender and sexual minorities can make them reluctant to disclose their orientation, worsening the problem.

The report recommends that federally funded surveys should proactively collect data on sexual orientation and gender identity, just as they routinely gather information on race and ethnicity.  Information on patients' sexual orientation and gender identity also should be collected in electronic health records, provided that privacy concerns can be satisfactorily addressed, the committee said.   The U.S.  National Institute of Health should support the development of standardized measures of sexual orientation and gender identity for use in federal surveys and other areas of data collection.

At our Institute of Women's Health Research at Northwestern U., we grappled with this issue for our Illinois Women's Health Registry which now has over 6000 women enrolled who are interested in participating in research.   Almost 3 % of our participants have identified themselves at lesbian.   One of the unresolved issues is how to include transgendered individuals who may be male or female at birth (their biological sex) but now live as female or male, respectively (their gender identity).   Can they only complete the Registry if they are born female, yet would that deny their gender identity as male?   This is certainly a complex issue and one that needs attention as sexual orientation becomes more mainstreamed and accepted.  The health risks of this populations could be significant since individuals undergoing a sex change are exposed to a variety of drugs and hormones that could influence health.  Guidance in this area would be very helpful to us.