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--> 4 Contextual Barriers to Conducting Research on Lesbian Health As in many areas of health research, the investigation of lesbian health operates in a context of factors such as political pressures (both national and research institution based), funding availability, and community attitudes. For researchers focusing on lesbian health, however, some of these pressures present particularly challenging obstacles. In this section, some of the contextual barriers to conducting research on lesbian health are reviewed, including the political context, the importance of establishing connections between researchers and the lesbian community, and the difficulties encountered by those wishing to conduct research on lesbian health. Barriers to Conducting Research For numerous reasons, researchers in academic and other settings (e.g., independent research institutes, clinical research centers, community research organizations) have been reluctant to initiate research on lesbian health. Many of the historical barriers continue to affect what research is done, how it is perceived, what kinds of resources are made available, and the personal and professional impact on those who conduct lesbian research.
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--> The committee identified several factors that have acted to inhibit the conduct of research on lesbians. As has already been noted, some of the reluctance to conduct research in this area arises because of the difficult methodological challenges that researchers face in designing and implementing sound studies of lesbians (e.g., because lesbians have been a hidden population, finding a diverse and representative sample can be extremely difficult). There are numerous other barriers, including the potential negative effects on academic careers of working with a stigmatized population, the lack of mentors for conducting research in this area, and the lack of funding. Potential Negative Career Ramifications Due to Stigma1 A woman researcher's lesbian sexual orientation can have a negative impact on her work experience in two primary ways. First, if she conducts lesbian-related research, her career may be negatively affected became of stigma associated with the lesbian population. Second, she may experience negative effects, such as discrimination, because she herself is lesbian, a problem potentially experienced by lesbians no matter what their work setting. Very few research organizations provide an environment in which lesbian researchers can (1) reveal their lesbian sexual orientation to colleagues and students without experiencing negative consequences, and (2) pursue research about lesbians without negative repercussions (Ryan and Bradford, 1997). In a survey by Ryan and Bradford (1997) of 284 lesbian researchers from 41 states and 14 countries, more than half of whom had been working as researchers for 10 or more years, both negative and positive experiences were reported as a result of being a lesbian and conducting research about lesbians. Of the lesbian researchers surveyed, 30% reported that they specialized in lesbian-related research. More negative career sanctions were associated with being a lesbian, however, than with conducting lesbian-related research. 1 The following sections incorporate significant portions of the workshop presentation by Caitlin Ryan.
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--> Stigma Associated with Conducting Lesbian Research Fear of negative career repercussions has prevented some lesbian and non-lesbian researchers, particularly in academic settings, from conducting lesbian-related research. The demands of attaining tenure in academia and promotions in nonacademic research organizations are so arduous that researchers interested in studying lesbians may feel they have to choose between research in this area and the pursuit of professional success. Most of the gay and lesbian academics surveyed by McNaron (1997) acknowledged that significant gains had been made, but many still felt that research on lesbian or gay issues was professionally risky. Although the committee is unaware of research in this area, it is reasonable to expect that similar pressures deter researchers in nonacademic research institutes and clinical settings from pursuing research on lesbian issues. Of the lesbian researchers surveyed by Ryan and Bradford (1997), less than one-third (29%) reported having a very supportive environment for conducting research on lesbian issues. Almost a quarter (23%) reported that conducting lesbian-related research had a somewhat or very negative impact on finding a mentor, adviser, or consultant; 26% reported negative impact on obtaining grant funding; and 23% reported negative impact on finding a job. Finally, a survey of graduate student members of the American Psychological Association Division 44, the division for the study of lesbian, gay, and bisexual issues, found that more than half of the students surveyed reported negative experiences from conducting research in this area (Pilkington and Cantor, 1996). The negative experiences included exposure to antigay or biased textbooks and course materials, offensive and biased comments from instructors, and a range of negative and discriminatory experiences with faculty, administrative staff, and interns. Approximately one out of three students was discouraged or warned that research on sexual orientation would have negative career consequences, or had experienced specific interference or refusal to allow research on lesbian and gay issues. Stigma Associated with Being a Lesbian in Research Settings The few studies on experiences that lesbian or gay researchers have with bias and discrimination have found significant levels of professional
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--> bias and negative career consequences. In surveys of gay, lesbian, and bisexual members of the American Sociological Association in 1981 and 1992 (Gagnon et al., 1982; Taylor and Raebrun, 1995), researchers who were open at work about their sexual orientation reported more experiences of bias related to their sexual orientation than those who were not. Such bias included discrimination in hiring, tenure, promotion, and scholarly devaluation; exclusion from social and professional networks; harassment and intimidation. McNaron (1997) studied gay and lesbian academics with more than 15 years of teaching and research experience. Most reported that although their institutions had antidiscrimination policies in place, they felt that their sexual orientation had an impact on their work experience. Only half of the academics had come out to department chairs and administrators, and about a third were open to their students. Approximately one out of four of the lesbian researchers surveyed by Ryan and Bradford (1997) reported believing that their difficulty in finding or keeping a job or in getting a promotion or obtaining tenure was due to being lesbian. Because no comparison group was included, however, it is not possible to determine how these experiences compare to those of other researchers. Isolation of Lesbians in Research Settings and Lack of Academic Mentors The limited number of people conducting research on lesbian issues has implications both for lesbian researchers and for students interesting in pursuing careers conducting research on lesbian issues. Lack of access to colleagues, mentors, and other researchers who are lesbian was cited as a major barrier to personal and professional development for the lesbian researchers surveyed by Ryan and Bradford (1997). Nine out of ten respondents ranked access to lesbian researchers as their top priority, and three-quarters said that mentoring was their primary need. Students who wish to pursue research careers that focus on lesbian issues face several challenges stemming from the lack of access to mentors who conduct research with lesbians. In a recent study of the experiences that lesbian psychology students have in conducting lesbian research, students reported difficulty finding supportive mentors, research advisers, or
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--> dissertation committee members; being required to educate advisers about lesbian issues; a lack of peer support; a lack of necessary materials in the university library; being held to a higher standard than other students; and concerns about getting their research published (Morris, 1995). Given these difficulties, students who might pursue research careers in lesbian health may themselves, or through the efforts of peers and colleagues, be directed to other areas of research study, thus reducing the pool of future researchers in lesbian health issues. Lack of Funding to Study Lesbian Health The lack of funding to support research on lesbian health hampered early efforts of researchers to conduct studies and has slowed the follow-up on specific findings. Lesbian health research has been criticized for lacking scientific rigor usually because of its use of non-probability samples and the lack of appropriate comparison groups. At the same time, with money in short supply for this area of research, it has been difficult to design and implement methodologically rigorous studies, which require larger budgets. The difficulty in obtaining funds is felt acutely by researchers doing clinical projects. Randomized, controlled clinical trials—the gold standard in clinical intervention research—do not now play a significant role in lesbian health research—the exception being the Women's Health Initiative (WHI), which includes some lesbian participants. The committee believes, however, that randomized clinical trials with lesbians are probably premature at this time because of the lack of evidence indicating differential health problems in lesbians.2 There are few sources for funding clinical research about lesbians. Although some foundations, including the Lesbian Health Fund of the Gay and Lesbian Medical Association, have begun to support studies in this area, the amounts are generally too small (typically around $7,000, the maximum amount available per grant) for substantial efforts. Major foundations have provided limited funds for lesbian, gay, and bisexual research outside the AIDS arena, and competition is high for the more limited 2 An exception might be a trial on health care utilization by lesbians.
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--> lesbian and gay funding sources. It is important to note that some federal funding for lesbian health research has been provided in recent years, notably through administrative supplements made available through the National Institutes of Health (NIH) Office of Research on Women's Health and initiatives supported by the Centers for Disease Control and Prevention (CDC) (see Table 4.1 and Box 4.1, respectively). Some funding has also been made available from the National Institute on Drug Abuse (NIDA),3 the National Institute of Mental Health (NIMH), 4 and the National Institute of Allergy and Infectious Diseases (NIAID). 5 The majority of research on lesbian health conducted to date has come from within the lesbian community itself, most of it with little funding and very few resources. Smaller pilot projects have often been done on a shoestring budget or have been added onto other funded projects without supplemental funding to cover the additional costs associated with data collection and analyses. The difficulty in obtaining funding, even for pilot studies, subsequently affects researchers' ability to compile the data needed to apply successfully for federal research dollars. Difficulties in Publishing Research and Disseminating Findings There is a growing body of published information on lesbian health, which is summarized in Appendix A. Nonetheless, much research from community-based or initiated studies is not published in the scientific literature, and academic studies usually are not shared outside the professional literature. There are likely numerous reasons why more published research on lesbian health does not appear in scientific journals. In some cases, this may be because the work lacks scientific rigor. Researchers on lesbian health report finding it difficult to publish the results of their work. Data are not available, however, to determine the specific nature of the barriers to publishing lesbian-related research. For example, it is not known 3 NIDA has funded a study to examine HIV risk among women injection drug users who have sex with women. 4 Studies funded by NIMH include research on HIV risk and coming out among gay and lesbian adolescents and on the mental health consequences of antigay and antilesbian violence. 5 NIAID has funded a study that includes a component examining the transmission of genital herpes simplex virus between herpes-discordant lesbian partners.
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--> TABLE 4.1 Lesbian Health Grant Supplements Funded by NIH Through the National Cancer Institute Interagency Agreement Grant Title Study Goals Funded Institution Improving Adherence in Women at Risk for Breast Cancer Investigate barriers to breast cancer screening faced by women at high risk. Supplemental funding used to collect data from 200 lesbians. Project will develop and pilot-test a breast cancer risk counseling intervention tailored to the unique needs of lesbians at increased risk for breast cancer. Georgetown University Increasing Breast Screening Among Nonadherent Women Identify the knowledge, beliefs, and practices of lesbians regarding breast cancer specifically and health promotion more generally; evaluate the risk factors for lesbians; and develop and test culturally competent health education interventions. Duke University A Multicenter Trial of Group Therapy for Breast Cancer Patients Assess and compare lesbian and heterosexual women's psychosocial adjustment to breast cancer; examine the usefulness of supportive or expressive group psychotherapy for lesbians with breast cancer. Stanford University Adjustment to Breast Cancer Among Younger Women Explore factors that contribute to distress of young breast cancer patients during diagnosis and treatment; test a counseling intervention to address issues of vulnerability and resilience that affect psychosocial outlook. Supplement used to replicate the study in an ethnically diverse cohort of lesbian breast cancer patients. Miami University Nursing Strategies to Promote Breast Cancer Screening Determine the effects of theory-based informational messages delivered by nurses on use of breast cancer screening among women who have not had mammography as recommended; examine whether the effects of messages on breast cancer screening rates are associated with sexual orientation. University of Wisconsin
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--> Box 4.1 CDC Research and Programs That Include Lesbians, 1997 The CDC has a number of research and other initiatives that include a focus on lesbians. These activities include the following: National Breast and Cervical Cancer Early Detection Program Outreach efforts are piloted through funding four demonstration projects with the Young Women's Christian Association (YWCA) of the United States (U.S.) and ECOREplus programs. A partnership between the YWCA and the Mautner Project for Lesbians with Cancer was established to design and test specific outreach strategies for breast and cervical cancer screening for older lesbians in four sites across the county HIV/AIDS Lesbians are recognized as a population of interest in which to address risks of HIV. Efforts are directed toward research into behavioral risk factors and toward quantifying risks of women who have sex with women, as well as the prevention needs of this population. The HIV Epidemiology Research Study, a multicenter women's HIV cohort study, addressess issues related to HIV and lesbians Funding (FY 1997) for a woman-to-woman HIV transmission study has been awarded that will be carried out in four sites: (1) Yale University; (2) the Lyon-Martin Center in San Francisco; (3) the Lesbian AIDS Project in New York City; and (4) the Whitman-Walker Clinic in Washington, D.C. In April 1995, the CDC carried out an external consultation to review the science on woman-to-woman transmission of HIV and to look at prevention needs of lesbians Violence The National Center for Injury Prevention and Control convened a workshop in 1994 to develop recommendations for research agenda in suicide and sexual orientation. These recommendations were published in a fall 1995 supplement to the journal Suicide and Life-Threatening Behavior SOURCE: Jones, 1997
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--> how many articles are actually submitted each year or the acceptance and rejection rates of papers on lesbian health. During the workshop the committee heard anecdotal statements that some journal editors and reviewers are reluctant to publish such work or to believe that it may be of interest to a broader audience. However, additional empirical information is needed before clear conclusions can be drawn regarding the factors that impede publication of lesbian-related research articles. I once had a manuscript returned to me unreviewed by a top journal, the only time in my career this has ever happened, because the editor informed me that his readers were not interested in research on black lesbians. He implied that the sample must be biased, because it was difficult to imagine that my research team could find 600 black lesbians to fill out the questionnaires in the first place. Susan Cochran, Public Workshop, October 6-7, 1997 Washington, D.C. The committee notes that a number of articles on lesbian health topics have been published in major biomedical journals (see Appendix A). 6 The committee believes, however, that the importance of research on lesbian health is such that it is desirable that more research on this topic be published in mainstream biomedical and behavioral health journals. In addition to being relevant to issues of women's health in general, this research is more broadly applicable or of interest to those conducting research on other sensitive behaviors or hard-to-reach populations; those interested in issues of cultural diversity and the impact of stress on health or resiliency; and so forth. The committee urges journal editors and reviewers to take this into account in reaching decisions about which high-quality papers should be accepted for publication. 6 An important development for the field of lesbian health is that the Gay and Lesbian Medical Association recently began publication of a journal that deals exclusively with lesbian and gay health issues, the Journal of the Gay and Lesbian Medical Association.
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--> Researchers are not surprised to have received rejection letters that say ''thank you for this manuscript, but we have already published one paper on lesbian health this year," or "thank you for this manuscript but lesbian health is not important to our readers. Jocelyn White, Public Workshop. October 6-7, 1997 Washington, D.C. Strategies to Provide a Supportive Lesbian Health Research Infrastructure There are a number of promising strategies that would enhance the ability of researchers to conduct research on lesbian health. The committee urges the NIH, including the Office of Research on Women's Health, to identify mechanisms for initiating these strategies in collaboration with representatives of the lesbian health community: Develop communication and information-sharing system(s) for lesbian health research issues and resources (e.g., information clearing-houses, web pages, and e-mail-based discussion lists) focused on discussion and dissemination of information on lesbian health research. Formalize a network of mentors at universities, independent research institutes, clinical research sites, and training centers throughout the country to provide mentoring support to students and peer support for researchers and academics interested in conducting such research. Offer technical assistance and training to those interested in conducting research on lesbian health to enable them to deal with the complex methodological challenges involved in designing and implementing these studies, including forming and managing collaborative research teams that include active participation from members of the study population. Further, the committee urges that the availability of federal funding be increased to support additional research on lesbian health and that funding mechanisms be developed to support doctoral and postdoctoral training in lesbian health research.
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--> The Need for Researcher-Community Ties7 The community-researcher link is a very important part of lesbian health research, as it is for other research that involves hard-to-identify, stigmatized, or culturally distinct groups.8 This link stimulates the development of important research questions, facilitates participation by research subjects, keeps researchers informed of important activities and changes in the research population, and provides opportunities for feedback to research participants. Researcher-community collaboration is critical for increasing the understanding of lesbians and their health needs. Historically, much research on lesbians has been conducted by community-based researchers and by master's and doctoral students, often lesbians themselves. This trend continues today, and important research on lesbians continues to be stimulated and carried out in community-based settings. When working with hard-to-reach populations and populations with specific needs, it is especially important to gain the perspectives of those who have a stake in the research, particularly members of the population of concern. This input can be solicited in a variety of ways. For example, focus groups can be assembled to review the need for the research, research questions, research plans, protocols and measurements, and outcomes of importance.9 Involving the community in the process of designing a study can produce a number of important benefits. A cooperative partnership between researchers and the community can help ensure that the research is feasible and that the fidelity of a study design is maintained. For example, staff at a community organization may have important insights into the types of people who use their services, what kinds of interventions could be promising, what procedures in an experimental protocol might be particularly difficult to implement, how to approach 7 This section incorporate portions of the workshop presentations by Joyce Hunter and Debra Rog. 8 By "community," the committee means a group of people, not necessarily living in the same geographic neighborhood, who are drawn together because of shared interests, values, or characteristics and who share or develop resources that address their interests. Thus, in this case, the lesbian community would include the network of resources and activities focused on the interests of lesbians in a particular area. 9 Community advisory committees have been used widely and successfully in HIV/AIDS research to accomplish this task.
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--> potential study participants in a way that is likely to result in participation, and so forth. Getting this kind of community-level feedback can be essential for the success of a research study. Commonly, lesbian researchers who conduct research on lesbian health already have deep and active ties to the lesbian community. Thus, they come with an indigenous understanding of the concerns of the community, at least for the subgroups of lesbians with which they are most closely affiliated (e.g., those involved in lesbian organizations or activities). However, this knowledge does not ensure understanding of the particular population under study, which may differ in terms of class, race and ethnicity, age, and so forth. Researchers who do not know the community must be willing to take the time and effort to learn about it. Because stereotypes about lesbian life are so pervasive and lesbians are not an especially visible community, there is a danger that researchers who do not familiarize themselves with the concerns of lesbians will choose to study topics that the community may not find useful or will misinterpret or misunderstand the implications of their results. If this happens, the willingness of the community to provide information freely will understandably be compromised. Lesbian, gay, and bisexual populations are, for the most part, marginalized. They may be suspicious of researchers and resistant to observation; this may be particularly true in lesbian and gay communities of color. There are numerous ways in which both the researcher and the community stand to benefit from researcher-community collaboration. Potential benefits for the researcher include the following: getting support for and cooperation with the research; helping to avoid bias; gaining an understanding of participants' concerns and fears, special needs, and disincentives to participate; ensuring that the right questions are asked; facilitating the participation of subjects; increasing the understanding of results; helping to develop ideas and analytic directions; and ensuring that the study design is feasible in a particular setting.
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--> Potential benefits to the community include methodologic expertise necessary to ensure meaningful, quality studies; data to help justify funding for health care and education programs; information on potentially modifiable risk factors; high-quality research that leads to a better understanding of lesbian health issues; and opportunity to pilot-test models for service provision. I just can't emphasize that too strongly, how important it was to get and recruit and train good people to go out and get lesbians in communities where the university-based researchers do not have some natural allegiance. Ann Pollinger Haas, Public Workshop, October 6-7, 1997 Washington, D.C. Researchers, community members, and community organizations have expertise, although usually in different areas. Factors that can influence the success of researcher-community partnerships include the following: Prior establishment of trust and a working relationship between the lesbian community and the researchers. Belief in the outcome of the research. Organizations in communities where research is being conducted will want to know what impact the research study will have on their clients and their organization. This can be facilitated by involving community members and organizations in the development of the research intervention. Involvement from the ground up in the development of the program. The participation of community organizations in the development of research interventions will help ensure that the research
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--> does not disrupt or interfere with their ongoing programs. It is important that community organizations not be presented with a finished product that is difficult to adopt or retrofit into their existing programs. It is important to have input and involvement of the source population in the interpretation and reporting of data, as well as during the design of the research. An understanding of limitations of resources and of different priorities. It may be important to reimburse community organizations for the time lost by personnel because of participation in the research. Such reimbursements not only establish trust and goodwill but also compensate for loss of staff time available to accomplish the activities of the community organization. Researchers "give back" to the community. Communities are often not informed of the results of research studies in which they have been involved. Stakeholders can and should be involved in the discussion of how research results can be used to improve the health of lesbians. Concerns about how confidentiality of information, particularly about sexual orientation, will be maintained must be addressed to the satisfaction of community-based agencies and potential research participants. Political and Legislative Barriers to Funding Research on controversial or sensitive topics, such as sexual behavior, sexual orientation, or drug use, can quickly become embroiled in politics. Researchers interested in doing wide-scale studies of sexual behaviors have faced numerous political challenges to the conduct of research in this area. In fact, it has taken the AIDS crisis to begin to alleviate the historical dearth of federally funded survey research examining the range of sexual behaviors in the United States (NRC, 1989; Laumann et al., 1994a). The experience of the National Opinion Research Center (NORC) in Chicago in conducting its national survey of sexual behavior provides an informative example of the effects of political pressures on the accomplishment of such research, particularly when data might be gathered on
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--> same-sex sexual behavior. In 1987, the National Institute of Child Health and Human Development (NICHD) issued a request for proposals to design a national survey of adult sexual behaviors, which was subsequently awarded to the NORC (Laumann et al., 1994a,b). The study included as its goals the collection of information about human sexuality, as well as information relevant to intervention programs for sexually transmitted infections, such as HIV. Subsequently, the study group was awarded a contract to begin the collection of data to demonstrate the feasibility of a larger national survey. The survey instrument was modified numerous times as the researchers and NICHD worked to develop an instrument that would be acceptable to the Office of Management and Budget, which must approve surveys designed under federal contract, and the Department of Health and Human Services (DHHS). In doing so, focus on the collection of basic data on human sexuality was minimized in an effort to secure approval. Nonetheless, even a more narrowly focused interview instrument failed to obtain approval during the four years of the next administration. Additionally, Congress rafted to authorize funding for the study during this period, with some members of Congress being vociferous opponents of the study. Ultimately, after it became clear in 1991 that strong opposition to the study by key members of Congress would make it very difficult for NICHD to provide funding for the survey, the NORC research team decided to forgo federal support and secured funding from a consortium of private foundations to conduct its comprehensive national study of sexual behavior. A national study on adolescent sexuality faced similar opposition from some members of Congress, particularly Jesse Helms (R-NC) (Laumann et al., 1994b; Time, 1991).10 Eventually researchers at the University of North Carolina were able to go forward with a related study despite federal concerns and reluctance to fund it. At the workshop, several possible political responses were identified that can have potentially negative consequences on the future of research on lesbian health (Gostin, 1997). For example, it was suggested that legis 10 Senator Helms offered the following amendment to the National Institutes of Health Revitalization Act, 1992: "The Secretary of Health and Human Services may not during fiscal year 1992 or any subsequent fiscal year conduct or support the SHARP [Survey of Health and AIDS Risk Prevalence] survey of adult sexual behavior or the American Teenage Study of adolescent sexual behavior." This amendment was adopted by the Senate, 51 to 46 (Congressional Record, April 2, 1991).
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--> lators might deny the existence of lesbians or, as is more likely, not recognize that their health issues are legitimate areas for broader concern. Another possible political response is to classify a particular behavior or identity as immoral. A belief that a behavior is immoral and a perception that a research or policy response somehow encourages this immoral behavior can impede research. It may be viewed as a less legitimate topic for federal research funding due to the perceived immorality. The research itself may be viewed as immoral, or more realistically, the research may somehow be considered to legitimize the behavior. Finally, another possible political response is to classify the status of being lesbian, or same-sex behavior, as unhealthy or a risk factor in and of itself, with resulting implications for funding lesbian health initiatives. This response can, moreover, potentially lead to discrimination against the group (e.g., differential health insurance costs even if individuals do not carry higher levels of scientifically identified risk). Ethical Considerations11 Given the limitations and scope of this workshop study the committee was unable to consider in depth the ethical issues related to the conduct of research on lesbian health. Nonetheless, the committee believes these issues to be of very great importance and so highlights here some of the concerns discussed at the workshop pertaining to the potential risks involved in participating in research and to the confidentiality of data.12 11 This section is based largely on the workshop presentation by Larry Norton. 12 More in-depth discussions of the ethical issues involved in conducting research with stigmatized populations, or involving the collection of data on stigmatized, sensitive, or illegal behaviors, are available. For example, the National Research Council (NRC) Committee on AIDS Research and the Behavioral, Social, and Statistical Sciences (NRC, 1989) considered issues of confidentiality in collecting information on sensitive behaviors, and the report of the NRC Committee on Evaluating Genetic Diversity (NRC, 1997) provides more detailed discussion of issues of privacy and consent related to the storage and future use of tissue samples. Laumann et al. (1994a) also consider issues of confidentiality and privacy in the context of their national study of sexual behavior. Boruch and Cecil (1979) provide a general reference on ensuring the confidentiality of social research data. The reader is also advised to look to research with other populations as a potentially helpful strategy for informing research on lesbian health. These include, for example, research with gay men (who share some of the same concerns regarding disclosure), research on minority populations (who similarly experience discrimination), and research on women in general.
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--> Risks to Research Participants Participating in research carries potential risks for lesbians, both as individual research participants and as members of a particular population group. As individuals, for example, participating in research can increase the chances that one's lesbian sexual orientation will be disclosed to others (e.g., through the sharing of databases if the data include identifiers). If the research participant has previously chosen not to disclose her sexual orientation publicly, perceived risks of disclosure can present a disincentive to participating in the research. Of greater concern are the risks that research on lesbians may have to the population of lesbians as a whole, particularly given the pervasiveness of societal homophobia. This includes the risk that research information will be used in some way to discriminate against or stigmatize lesbians in general. For example, if lesbians as a group were found to be at higher risk for a particular health problem, providers of health or life insurance might argue that they should be denied coverage or charged higher premiums, because their increased likelihood of incurring higher health costs or having a shorter life span increases the risk for insurers. Another potential risk relates to the privacy concerns of the social groups of lesbians to which individuals belong (Laumann et al., 1994a). Even when individuals give informed consent to participate in research, in the process of responding they may reveal information that violates the privacy of their sexual partners, as well as the privacy of the group. Although the committee acknowledges these potential risks, the committee also believes that significant benefits to the lesbian population can accrue from studying lesbian health, provided careful protection of individual rights is in place. These include identifying areas of increased risk that need attention, identifying gaps in services, and increasing understanding of the negative impact of homophobia on health. In the case of the participation of gay men in studies of AIDS, barriers to participation were overcome by a sense of community that emerged from the feeling that this is a problem faced by all members of the gay community. To what extent organized lesbian groups will strongly advocate a research agenda is yet to be determined and may vary depending on the focus of the research and the ways in which community involvement is sought.
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--> Confidentiality Maintaining confidentiality is a key concern in studies with lesbians. Information collected from an individual can be regarded as confidential with respect to others if it will not be disclosed to anyone else in an identifiable manner without the specific consent of the individual who supplied the information (Boruch and Cecil, 1979; Laumann et al., 1994a). Because being lesbian is often stigmatized and some same-sex behaviors are illegal in some jurisdictions, concerns are heightened about how information gathered about sexual orientation will be used (Platzer and James, 1997). Numerous strategies can be employed to ensure confidentiality, such as using coded identifiers instead of names (Boruch and Cecil, 1979). However, although keeping data completely anonymous clearly protects confidentiality, it also precludes follow-up of nonrespondents and accurate calculation of response rates, as well as the longitudinal follow-up of respondents to assess changes over time. Strategies that ensure confidentiality help to secure research participation and elicit candid responses only to the extent respondents actually believe that the information gathered will be kept confidential. Certain, but not all, public databases are shared among groups such as health care providers, government organizations, and public health departments. Often these data fries are linked to unique identifiers, such as a social security number. This is true for many large-scale government surveys where information is used to link sources of data and to help in locating people in order to collect longitudinal data. At the workshop, several participants expressed concerns about gathering information on sexual orientation in government surveys, with some voicing fears that information gathered in one survey might be used as a way to identify lesbians for some harmful purpose (e.g., to detect illegal behavior, to limit access to services). Whether or not these fears are well founded, they illustrate some of the heightened sensitivity regarding confidentiality. Reliable data are not available on the degree to which lesbians are trustful of researchers, particularly in cases of government surveys, although it is likely that concerns regarding confidentiality have an impact on both their level of participation in these surveys and how candid they
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--> are in their responses. The committee concludes that research is needed on whether lesbians will answer sensitive questions about their sexual orientation and health-related practices on confidential government surveys that have personal identifiers. Several additional issues were brought up during the workshop about which the committee urges further discussion among researchers, lesbians, and funders: What are the specific questions that institutional review boards 13 should consider when evaluating research involving lesbians, and are there particular directions or instructions that should be provided to institutional review boards to aid them in evaluating research involving lesbians, particularly with respect to confidentiality? What considerations are unique to obtaining informed consent from participants in research on lesbian health, including consideration of the potential risks and benefits of participation? What considerations should be given to obtaining consent for minors to participate in research where information on same-sex behaviors will be gathered, especially given that parents may not be aware of their child's sexual orientation? What procedures are most effective for ensuring that confidentiality is maintained in research with lesbians?14 Is there a need to develop new mechanisms? What unique issues are involved in the future use of data collected from lesbians, including the collection of genetic information? What is the range of privacy issues involved in conducting research on lesbian health, and are there special considerations that should be given to protecting the privacy of both individual research participants and the larger population of lesbians? 13 Institutional review boards are responsible for reviewing research proposals to ensure that they are in compliance with institutional and federal regulations regarding the protection of human subjects. Institutional review board approval is required for federally funded research involving human subjects. 14 Under federal law, researchers can obtain a Certificate of Confidentiality to protect research data from being disclosed under subpoena. The types of information that may be protected by a Certificate of Confidentiality include drug use, alcohol use, illegal behavior or activities or sexual practices or preferences.
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