What must be considered when using vulnerable populations for sexuality research?

1. What must be considered when using vulnerable populations for sexuality research? Vulnerable populations are defined as elderly, children, pregnant women, the unborn, institutionalized persons, prisoners, the poor, the illiterate, those with terminal illnesses, emotionally or physically disabled people. They are considered vulnerable because they may be mentally or developmentally incompetent to make a decision even when given complete information (Cottrell & McKenzie, 2011).

2. What must be considered when using vulnerable populations for sexuality research? (Cont) When using vulnerable populations for sexuality research, the following aspects must be considered: That participants are not being exploited through the research That the researcher may need to determine if there is a therapeutic or non-therapeutic benefit available to participants That the researcher needs to make sure the vulnerable participants are not participating under duress That the research should be predicated on participants' involvement to establish their needs and aspirations, right to self determine the research agenda and approach, and to be able to develop their own research capacity (Neville & Wilson, 2009)*.   *Randall Cottrell & James McKenzie (2011). Health Promotion & Education Research Methods Using the Five-Chapter Thesis/Dissertation Model. 2nd Ed. Salisbury, MA. Jones & Bartlett. Wilson, D., & Neville, S. (2009). Culturally safe research with vulnerable populations. Contemporary Nurse: A Journal for the Australian Nursing Profession, 33(1), 69-79.

3. What challenges does it represent for research around sexuality related research? Researching sensitive topics, such as issues surrounding sexuality, requires researchers to be keenly aware of their research ethics. This is particularly significant when considering vulnerable populations, including, but not limited to: children, the handicapped, the elderly and prisoners. Consent, Privacy, and Confidentiality may be among the most significant challenges for researchers when working with vulnerable populations.

4. Challenges for research: Consent Consent may be difficult to obtain from members of a vulnerable group, due to a possible disparity of intellect or understanding between researcher and participant. Some individuals may be “incompetent to make a decision, even when presented with complete information about the research project” (Cotrell & McKenzie, 2001, p.102). This may apply to individuals who are either mentally or developmentally handicapped, i.e children, elderly, etc. “Others…maybe vulnerable because they see researchers in positions of authority or commanding influence and feel they can enhance their position by participating or are afraid of the consequences if they do not participate (Cotrell & McKenzie, 2001, p.102). Children and prisoners may fall under this easily influence able category.

5. Challenges for research: Privacy Privacy, may be a central concern when researching vulnerable population. “When an individual, group, or institution has agreed to participate in a study, it becomes the duty of the researcher to protect the information provided by the research participants (Cotrell & McKenzie, 2011).” When considering work with vulnerable populations, a researcher must take into account all of outside influence a research participant may face. For example, we may find difficulty with children as participants because of their parents or care givers interest or feelings on the subject being discussed. The handicapped and the elderly may face the same difficulty participating freely if they are cared for in an institution or by a personal care giver. Prisoners and other institutionalized populations alike, may not be able to participate freely, due to the perceptions of the institution's leaders and regulations.

6. Challenges for research: Confidentiality Confidentiality, may also be difficult to maintain. Cotrell and McKenzie write, keeping the information “under lock and key” during the study and destroying the information when the study is complete, is vital to protecting participants. Regulatory bodies such as parents, care givers, institutions may be interested in participants’ responses, the role of the researcher is to protect all gathered information and anonymity of the participant

7. Vulnerable Populations:  How does the topic affect research proposals? When doing a proposal to do research with human participants, a researcher should take into consideration the Belmont Report’s three fundamental ethical principles: respect for persons, beneficence, and justice (Cottrell and McKenzie, 2011, pg 98). Therefore, the researcher has to design a research proposal that respects and protects the dignity and autonomy of the individuals; that minimizes the risks or possible harms while maximizes the benefits; and that treats participants fairly.

8. Vulnerable Populations:  How does the topic affect research proposals? (Cont) If a researcher decides to do a study with participants who belong to vulnerable populations like children, handicapped, the elderly, and prisoners; then the research proposal would have to include: Reasons why the research has to be done with that particular population -especially if they are not going to benefit from the application of it. Is it because of scientific reasons, or because they are more likely to be influenced into participating? Acknowledging that vulnerable populations are in great need of resources, and that the researcher may be seen as a powerful authority that could help with those needs; the researcher should be aware of the delimitations of participants “freely” agreeing to be part of the research.

9. Vulnerable Populations:  How does the topic affect research proposals? (Cont) 3. Techniques, methods or tools that will be used to explain the research to participants. In the case of working with illiterate participants, or participants with a mental disability, the researcher may have to find creative ways to explain the study, and to assess that participants have a clear understanding of it, prior to their participation. • Clear guidelines about how the privacy of participants will be respected and protected during and after the research. Though this should be included for any research with human participants, the researcher may have to face more challenges when studying participants that are under someone else’s care (like children, the elderly, and/or handicapped) or are institutionalized (prisoners) • If needed, the researcher needs to explain the use of an untreated control group, and its ethical consequences.

10. Example of unethical research made with vulnerable populations • In an effort to study the use of penicillin to cure sexually transmitted diseases, the Public Health Service of the US paid for a research in which male prisoners and female mentally-ill individuals were deliberately infected with syphilis, gonorrhea or chancroid in Guatemala, from 1946 to 1948. • Interesting enough, the director of the research project was Dr. Cutler, who oversaw the Tuskegee project after finishing his work in Guatemala • Here it is a link to the complete article published on the New York Times on August, 31, 2011: http://www.nytimes.com/2011/08/31/world/americas/31syphilis.html?pagewanted=all Please pay attention to the small box on the left of the article; it is an image of a NYT article on April 27, 1947, in which Dr. Cutler actually admits that “shooting syphilis virus into human bodies is ethically impossible” This example also raises questions about the ethical parameters of research made with vulnerable populations in poor countries.