PubMed · 14628641
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Barbara Harty-Golder. 2003. Direct access testing demands specific lab responsibilities.. https://pubmed.ncbi.nlm.nih.gov/14628641/
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Initiation and implementation of nontherapeutic genetic research projects, sponsored by developed countries and conducted in developing countries, requires careful consideration and awareness of procedures that ensure ethical research. This article reviews, and discusses controversies surrounding, the ethical principles established internationally and recommended by institutions in the UK for designing and implementing nontherapeutic genetic research studies. Before project commencement, the researcher should submit proposals to appropriate ethics committees and, wherever possible, seek guidance from experienced researchers. The researcher must also be aware of his/her responsibilities when conducting research with human participants. Responsibilities include respecting autonomy, privacy and confidentiality of participants, respecting social and cultural differences, providing appropriate information to participants, obtaining informed consent and offering appropriate compensation for participation. Finally, researchers involved in human genetics studies must also consider specific issues and public concerns when collecting biological samples. This includes using anonymised samples, considering future use of samples and ensuring confidentiality of results.
PURPOSE: To explore theatre as a public engagement tool for health-policy development. BACKGROUND: In a justice-based democracy, engagement of a large number of citizens of diverse perspectives is required for legitimate health-policy development. However, all current strategies of citizen participation are limited in their capacity to engage, either by lack of opportunity to educate citizens prior to soliciting their opinions or lack of large numbers of citizens. METHODS: A series of 12 nested case studies was conducted, with each case study consisting of a performance of a 70-min play, specifically written to educate citizens to scientific, clinical, and psychosocial issues of adult predictive genetic testing, and to foster empathy for persons immersed therein; and a 1-h audience discussion that was taped and transcribed for qualitative analysis (modified thematic). The script was based on key informant interviews, literature review, and six script readings for key informants and communities. Audience members were recruited through conference or educational event programs, posters, newsletters, and electronic announcements, as well as newspaper advertisements and other public, community and institutional postings. RESULTS: More than 1,000 citizens were engaged. The analysis indicated that audience members were engaged emotionally and cognitively in the position of the characters and the health-policy issues. Audience members' comments forwarded from personal or professional lived experience confirmed the validity of the script and promoted further emotional and cognitive engagement of other audience members. Audience members offered informed and diverse opinions on policy issues, including resource allocation, patenting of genetic tests, research funding, genetic test-based insurance discrimination, and imperative for public education. The potential for harm to key informants and audience members (and those in relationships with them) were observed, usually related to learning or offering personal information regarding their genetic risk. CONCLUSION: As many citizens can be engaged in theatre-based policy development as surveyed through public opinion polls, and many times the number that can be engaged in strategies that educate citizens prior to soliciting their opinions, likely at a similar cost per citizen engaged.
The health inequalities in South Africa are rapidly worsening. Since 1994, the new democratic government has initiated a number of large-scale policies and programs with explicit pro-equity objectives that have improved access to health care and other social resources. However, these policies and programs have been constrained by macroeconomic policies that dictate fiscal restraint and give priority to technical rather than developmental considerations. We propose an approach to improving health for all that focuses on equity in the allocation of health resources. The implementation of pro-equity policies requires, in addition to technically efficacious interventions, both advocacy initiatives and communication with, and the involvement of, affected communities. The Cape Town Equity Gauge project is presented as one example of a response to the challenge of inequity.