A lawyer and researcher at the Johns Hopkins Berman Institute of Bioethics says a new legal and ethical framework needs to be placed around the donation and banking of human biological material, one that would more clearly define the terms of the material's use and address donor expectations before research begins.
In a new law review article, "Why Not Take All of Me? Reflections on The Immortal Life of Henrietta Lacks and the Status of Participants in Research Using Human Specimens," Gail Javitt, J.D., M.P.H., uses the story of a woman whose cancerous cells revolutionized medical research as the launching point for an exploration of the flaws in the current legal approach to the use of human specimens in research.
The Immortal Life of Henrietta Lacks, by science journalist Rebecca Skloot, has stoked public interest in the ethical obligations owed to tissue contributors. Javitt says the "story is a powerful reminder that, behind every tissue sample in a laboratory, is the person it came from."
Recently, Skloot announced that her book will be adapted and turned into a cable-television movie. Javitt applauds moving the discussion of these issues into the public forum. As she writes, "by telling the Lacks family's story in such an engaging, accessible way, Skloot has moved the discussion beyond the narrow confines of courtrooms and academia and into the public domain, where all those with a stake in the answers can participate."
Published in the Minnesota Journal of Law, Science and Technology, Javitt's article reports that human tissue and DNA are increasingly being collected and used in research. Yet they are obtained and stored under a patchwork of policies some broad, some specific that dictate how they may or may not be used in the future.
Many in the legal and scientific arenas say this is because federal and case law have fallen behind modern research demands and techniques.
The federal human subje
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Johns Hopkins Medical Institutions