Bioethics, Medical Research and Indigenous Rights

I have been reading a book by Rebecca Skloot, “The Immortal Life of Henrietta Lacks”.

This book traces the story of Henrietta Lacks, her family, and the cells that were taken from her when she was ill and then used in medical research. The book raises important questions about the ownership of DNA and cells, of medical research ethics in human subjects research, and informed consent. The book is riveting, well-written, and disturbing and inspirational at the same time.

Henrietta Lacks was African-American. But the bioethics questions raised about her own situation certainly resonate with bioethics questions and indigenous peoples. This is the first in a series of blog posts that will explore and address the issue of bioethics and indigenous rights.

The book, in a timeline appended at the back, mentions a lawsuit of the Havasupai tribe in 2005 raising bioethics issues not dissimilar from those raised about the cells taken from Henrietta Lacks.

A New York Times article from 2010 comments on the settlement that was reached, with “pay[ment] $700,000 to 41 of the tribe’s members, return the blood samples and provide other forms of assistance to the impoverished Havasupai — a settlement that legal experts said was significant because it implied that the rights of research subjects can be violated when they are not fully informed about how their DNA might be used.”

The problems and issues raised about bioethics and bio-prospecting and the rights of indigenous peoples remain important and unresolved issues. This 2011 article from NATURE outlines an issue involved in genome sequencing of the indigenous peoples of Australia, and further comments on the issues when human material is held in museum collections “The study also raises broader consent issues over body parts of indigenous people held in museums, says Kowal. Many collections are returning bones to these groups, but the British Museum in London, for instance, generally excludes hair and nails from its repatriation policy. Such specimens are a valuable tool for studying the genomes of people from around the world, including populations that no longer exist, argues Willerslev.”

Medical interests include not only the benefits to medical science, but of the profits that can be made from patents of human genetic material. This article gives a helpful summary of the various interests at stake and explains the role that international law has to play in an issue that combines medical and research ethics and laws and human rights:

“Beyond ethics, indigenous populations and human rights activists have found support in emerging international human rights jurisprudence on the need to protect indigenous peoples from racial discrimination and the emerging imperative of safeguarding indigenous peoples’ knowledge. For example, article 8(j) of the Convention on Biological Diversity obliges states to “respect, preserve and maintain knowledge, innovation and practices of indigenous communities and promote their wider application with the approval and involvement of the holders of such knowledge.”

What are the current legal standards? What safeguards are put in place by researchers to ensure that the standards of informed consent as well as ownership and potential profits are met? What developing standards have occurred through litigation? These are questions that future posts on this blog will address.

Written by Sarah Sargent.