Ethics of encouraging subjects receive HIV test results

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 StudyMultiple 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