1. Ethics of encouraging subjects receive HIV test results Don C. Des Jarlais, PhD Director of Research Baron Edmond de Rothschild Chemical Dependency Institute Beth Israel Medical Center, NY NY

2. Fundamental Issue Should research subjects who have been tested for HIV (or other contagious diseases) be encouraged to return to receive test results? Should monetary rewards be used to encourage?

3. Universal Ethical Principles Autonomy Beneficence Justice

4. Changing Historical Context Reduction in HIV-related stigmatization Development of treatment for HIV infection

5. Early HIV Research 1985-1987 Test licensed in 1985 No necessary benefit to being tested Potential severe discrimination if tested

6. Early HIV Research 1985-1987 Proposal that research subjects allowed to donated anonymous biological sample NIH ruling that subjects must agree to receive results if sample tested No provisions to encourage return for results

7. Three Current Studies All approved and funded by NIH

8. HIV and TB Study Multiple Sites Subjects paid small honoraria to participate in HIV and TB testing Subjects paid small incentives to return for TB and HIV test results Referrals for HIV positives Subjects paid small incentives to receive DOTS for TB Highly cost-effective (societal perspective) to pay incentives for TB testing and DOTS treatment

9. HIV Testing in Healthcare Setting Study Subjects paid small honoraria for HIV counseling and testing Not paid incentives for receiving test results Rapid testing used if subjects prefer, so that results available before leaving site

10. HIV Testing in Street/Field Setting Study Providing results would be difficult in terms of cost and maintaining confidentiality Subjects provide anonymous oral fluid sample Subjects who desire results referred to easily accessible separate test site Almost all subjects have been previously tested

11. Summary Great variation in current studies Each adapted to specifics of the data collection sites Is this too much variation? Is it ethically desirable to provide incentives to receive test results? Is it ethically desirable to provide incentives to receive treatment for contagious disease?

12. Summary When might payment of incentives become coercive? When might payment of incentives undermine “normal” healthcare? Do the ethics of paying incentives vary by disease, e.g., HIV vs. other STDs vs. TB? Should potential societal cost effectiveness of paying incentives be included in ethical analysis? Note this will vary by prevalence of the disease