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Posters Selected for Recognition Conference Information “Innovations in…” Series

posters

to participate in the survey was high, as indicated by a high response rate. The most influencing motivator to participate was mainly the need for healthcare-related benefits, and some were motivated to participate out of curiosity for new interventions for HIV treatment. Most participants said the healthcare benefits were the most important to them and they would worry about the loss of these benefits if they were taken away. Participants generally felt that researchers should decide on the types of benefits to be offered in a study. Other concerns the participants had were post-trial care, paediatric care for their children, and food aid. Before participants entered the study, 52% expected to receive antiretroviral drugs (ARVs), 13% did not expect anything at all, 12% expected healthcare, 9% expected money, and 7% expected health education and psychosocial support. Reasons for participating included: access to ARVs (76%), access to medical care (27%), curiosity (24%), and HIV/AIDS education and psychosocial support (13%). Participants felt decisions regarding benefits should be made by researchers (68%), the Ministry of Health (19%), and research participants (15%). Conclusions: Participants’ perception of research benefits is that they should improve their health, and their decisions to participate are greatly influenced by the type of benefits. The preferred form of benefits in this trial was the provision of ARVs, which are inaccessible and unaffordable in the public healthcare system. Participants have shown a willingness to be involved in making decisions on benefits of research. It is an ethical imperative to include study participants in decisions involving them. Limitations: These study findings were limited in that they reflect the views of people in one urban area participating in one clinical trial and, as such, may not be generalizable to other groups. The questionnaire for the study was predominantly closed ended, meaning that by giving participants choices of predetermined answers, it would limit their responses and thought processes. Next Steps: A qualitative investigation using focus group discussions and individual open-ended interviews would yield more valuable data on this subject. POSTeR 76

Risk, Reward, and the Double-Edged Sword: Alaska Native Perspectives on Pharmacogenetic Research and Testing

Jennifer Shaw, PhD; Renee Robinson, PharmD; Helene Starks, PhD, MPH; Wylie Burke, MD, PhD; Denise Dillard, PhD Southcentral Foundation

p rim& r’ s 20 1 3 adv anci ng e th i cal r e s e a rc h c on f e r e n c e

Problem Statement: The promise of personalized medicine has broad appeal, and pharmacogenomics is the “golden child” of modern medical science. However, pharmacogenetic research and clinical testing (PGX) raise important concerns, especially in communities where past research has perpetrated harm and cultivated distrust of healthcare systems and providers. This study investigated perceptions among Alaska Native (AN) people of PGX, as well as its utility and acceptability in an AN-owned and operated healthcare system. Methods: Four focus groups, held with 32 AN people in Southcentral Alaska, elicited views about PGX in general and for treatment of four conditions. Data were inductively analyzed for perceived risks and rewards of PGX using tenets of grounded theory and ATLAS.ti 9.2. Results: Perceived risks of PGX included the potential for healthcare rationing, misuse of information, and increased stigma for AN people. Perceived rewards included the potential for decreased cost of care, improved outcomes, and community development. Participants also discussed eight contingent conditions (i.e., if/then scenarios) that could mitigate potential risks and increase PGX acceptability, such as the direct involvement of AN people in PGX research and clinical care, and culturally-relevant informed consent. Participants did not endorse using PGX for nicotine cessation and depression treatment as strongly as for cardiovascular disease and breast cancer. Limitations: Study findings drawn from a small sample at a single institution have limited generalizability. Males were underrepresented and thus the findings may not represent the views of AN men about PGX. Despite these limitations, these findings may be useful in populationbased healthcare systems with limited resources. Conclusions: PGX is recognized as a “double-edged sword,” a cutting-edge science with the power to heal as well as harm. These AN study participants’ recognition of the dual potential of PGX tells a cautionary tale for anyone working in communities where past research and clinical practices have produced a legacy of distrust. PGX must be undertaken with respect for these histories, restorative relationship, and responsiveness to the ethical concerns and contingencies of the communities in which we work. Additional research on the perceived utility and acceptability of pharmacogenetic research and testing should be conducted with historically underserved populations

2013 AER Conference Guide  

Digital version fo the Conference Guide for the 2013 Advancing Ethical Research Conference

2013 AER Conference Guide  

Digital version fo the Conference Guide for the 2013 Advancing Ethical Research Conference

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