It Takes Two to Tango: Ethical Issues Raised by the Study of Topical Microbicides with Adolescent Dyads

Ott, Mary A.

doi:10.1016/j.jadohealth.2008.03.009

Cited by 3 publications

(1 citation statement)

References 11 publications

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“…While federal research regulations refer to state laws on minor consent, these laws vary considerably and many were written before biomedical HIV prevention existed, making interpretation difficult. (Ott 2008) Issues raised by minor self-consent lend themselves to public deliberation. There are values issues, such as views on parental authority vs. youth autonomy, sexual and gender norms, and beliefs about the appropriateness of risk reduction for youth where abstinence is preferred.…”

Section: Minor Consent and Public Deliberationmentioning

confidence: 99%

Avoiding a Tyranny of the Majority: Public Deliberation as Citizen Science, Sensitive Issues, and Vulnerable Populations

Ott

Knopf

2019

The American Journal of Bioethics

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Citizen science is touted as a means of making science more inclusive and democratic. However, when citizens are drawn from societies with significant socioeconomic and racial disparities, citizen science may reproduce the same structural oppressions that exist in society at large. We use the case of public deliberation on minor consent for HIV biomedical prevention trials to illustrate the potential for structural oppression in citizen science, and then outline approaches to mitigate these concerns. Public Deliberation as a Citizen SciencePublic deliberation is a form of citizen science for controversial health policy issues. In public deliberation, a group of ordinary people (citizens) are assembled for education and a facilitated discussion. This ideally sets the groundwork for a more deliberative discussion that is "informed, value-based, and transformative." (Blacksher et al. 2012) The goal of public deliberation is not consensus, but rather to identify, clarify, justify, and balance competing viewpoints, producing a set of recommendations for policy-makers. (Blacksher et al. 2012) Scientific experts, stakeholders, and policy makers play supportive roles, providing data and education to inform the deliberation. Education and facilitation are key features that distinguishes deliberation from traditional research methods, in which participants are typically asked to respond to questions in light of their existing knowledge about the phenomena of interest. Public deliberation has been used successfully for topics such as biobank consent, vaccines, and setting priorities for public health spending. Public deliberation allows citizens to assess data and make recommendations that can be considered alongside those offered by scientists and policy-makers.

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Section: Minor Consent and Public Deliberationmentioning

confidence: 99%