The Ethics of Finding a Cure for HIV

At the 2014 International AIDS Conference in Melbourne, Australia, discussions about the race to cure for HIV are inevitable.   We in an exciting era in HIV research, with tumultuous announcements of breakthroughs and setbacks that we expect to lead us toward a world where HIV is an anachronism. The speed at which researchers are being funded to churn out publications toward a cure for HIV is unprecedented.

We can visualize the benefits, but at what cost?  Research and new innovations have social and ethical ramifications that should be considered, including those to human subjects –people- willing to part take in experiments.  The Mississippi Baby born with HIV and thought to have been in remission is a human subject to experimentation.  Although international policies and regulations for research with human subjects are in place, what special considerations should the HIV community consider in reaching a cure?

The goals of researching for a cure

The path toward a cure is based on either rooting out reservoir cells that harbor latent HIV provirus, or eliminating the creation of these reservoirs early in the infection before they form.  The National Institutes of Allergy and Infectious Disease outline the goals in seven points on their website:

  • Identify HIV reservoirs throughout the body
  • Determine the effects of antiretroviral therapy, chemotherapy, and other strategies on the HIV reservoir
  • Develop assays and model systems, including a nonhuman primate model, to quantify and study HIV latency
  • Characterize viral reservoirs that cause rebounding of viral levels when antiretroviral therapy is stopped
  • Determine the role of HIV integration on virus elimination strategies
  • Determine the role of HIV in hematopoietic progenitor cells regarding cure strategies
  • Investigate strategies that lead to purging of the latent reservoir and a cure for HIV/AIDS

 

What are the ethical and social considerations?

The Working Group on Ethics of the International AIDS Society is bringing together stakeholders to ask that very question.   The working group is comprised of researchers, sponsors, oversight committees, community advisory boards, and HIV advocates made the point that all stakeholders should 1) work together to meet ethical challenges, 2) publish in a timely manner and include negative and adverse findings, 4) ensure that informed consent should include a formal assessment of the participant’s understanding, and 5) include a plan for how those with low resources will be able to access a cure post trial (Lo, Grady, & Society, 2013).

 

Social and Ethical Aspects of Research on Curing HIV (SEARCHIV)  is a multi-site, multi-disciplinary working group focusing on investigating the biosocial implications of curing HIV infection with sites in Cape Town, South Africa; Chapel Hill, USA; and Guangzhou, China.  SEARCHIV aims to develop a theoretical framework about HIV cure research and early implementation using historical, conceptual and ethical data; determine HIV cure stakeholder perspectives on cure research and early implementation; and develop an online forum to promote stakeholder engagement focusing on the social and ethical implications of HIV cure research.

Many of our readers may remember a world where HIV didn’t exist; others may have trouble fathoming such a place. In any case, we must consider its inevitability.  Considering the social and ethical ramifications of research and subsequent dissemination presents us with some welcomed challenges.   For those of us in the field, considering the ethical implications may be based on your cultural, community, and personal values.  My biggest ethical consider is that no one gets left behind.

Written by: Erik Valera
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The Institute for Latinx Health Equity is a growing collaborative of public health researchers, behavioral scientists, community leaders, capacity building specialists and social justice advocates. We strive to disseminate information about issues pertinent to health disparities and inequity. Follow us, join us, comment and add your voice to ours.

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