Women and Health Research Ethical and Legal Issues of Including Women in Clinical Studies: Volume 2: Workshop and Commissioned Papers (1994) / Chapter Skim
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2 Women in Clinical Studies: A Feminist View
2 Women in Clinical Studies: A Feminist View
Pages 11-17
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From page 11... ...
that there is overwhelming evidence that women are systematically oppressed in society on the basis of their gender, and that, in many cases, gender oppression is complicated and exacerbated by other forms of oppression based on such features as race, class, ethnicity, age, religion, disabilities, or sexual orientation. I also take it as well-established that the institutions responsible for the identification and delivery of health care services are implicated in the existing patterns of oppression; they play a role in the power structures of society and have, in many distinct ways, contributed to the multiple forms of oppression, and, more positively, they can play a role in dismantling oppressive systems.2 I wish to make clear that I am not attributing malice or deliberate intent to everyone who participates in oppressive practices.
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From page 12... ...
Historically, many studies of diseases that are common to both sexes have systematically excluded women from participation, so the necessary data for guiding treatment decisions for women are unavailable.4 Women's health care must often be based on untested inferences from data collected about men, but because there are important physiological differences between women and men, such inferences cannot always be presumed to be reliable; and, even when some data are collected about women's responses to the treatment in question, we may lack information about how a proposed treatment will affect specific groups of women (e.g., those who
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From page 13... ...
Clinical trials often expose subjects to significant risk, discomfort, or inconvenience without offering any special benefits to either the subjects or the groups from which they are recruited; in many trials, other, more privileged subjects would have served equally well except for the fact that the well-being of such people is more highly valued by society. Many shameful events in the history of clinical research testify to the ease with which researchers exploit the vulnerability of oppressed or devalued members of society for the ultimate benefit of others; far from demonstrating an interest in providing effective care for the group in question, in these cases the choice of subjects reflects the perceived expendability of members of the subject group.5 Various approaches have been pursued to guard against the exploitative abuse of research subjects.
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From page 14... ...
For example, almost all contraceptive research has explored means of controlling women's fettility.7 Similarly, efforts to relieve infertility have focused on procedures that can be done to women-even when the infertility is associated with such male conditions as low sperm count.8 As aresult,a disproportionate share oftheburden,risks, expenses, end responsibility for managing fertility now belongs to women, because that is where the knowledge base is. Again, this imbalance in available knowledge can be recognized as unjust by traditional distributive justice measures, but a richer social justice perspective provides further indications of injustice in light of the fact that women's oppressed status is inseparable from their traditionally assigned roles in the spheres of sexuality and reproduction.
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From page 15... ...
Other specific health concerns of those who are most marginalized in society tend to be virtually ignored: e.g., there is little research into lupus, a disease found three times as often in black women as in the general population;~° and despite the flurry of research attention provoked by AIDS, the investigation of AIDS in women has also been neglected, perhaps because it is believed that few white women are at risk of contracting AIDS, though African American women face a risk 12 times higher. ~ addition, too many clinical studies explore expensive, highly technological solutions which, even if successful, will be accessible to only a small proportion of the population within developed countries-they are virtually useless in a global perspective of health needs.
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3. This argument is spelled out in greater detail in Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care (Philadelphia: Temple University Press, 1992~.
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From page 17... ...
10. Vida Labrie Jones, "Lupus and Black Women: Managing a Complex Chronic Disability," in White, ea., The Black Women's Health Boot 11.
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