Henrietta Lacks and the Great Healthdata Giveaway

Part Seven of Seven-Part Blog Series by Guest Blogger Patrick Taylor

A suggestion runs through the debate on the NPRM to amend the Common Rule that the proposed changes are a tribute to Henrietta Lacks, a necessity so her story is not repeated.

That story was told in a the national bestseller  The Immortal Life of Henrietta Lacks, a moving biography of the young woman whose  aggressive tumor was the source of the ubiquitous HeLa cells (probably without her consent, certainly without her awareness of what followed); her family;  the  cells’  (and her) dehumanization into a research tool to be exploited unthinkingly; and the poverty, disconnection, racism,  lack of health care and lack of concern for her family. Society and scientists received a bonanza, and did nothing for her family in return.  The book criticizes phony consent, and advocates sharing  cell line proceeds with donors and their families. It rekindled discussion of consent and racist legacies, while urging that injustice required social change.

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Radical Redesign of Health Care and Its Implications for Policy: A Lecture by Donald Berwick, MD, Administrator of the Centers for Medicare and Medicaid Services (2010-2011)

stethoscope with puzzleSpecial Lecture to Open ASLME’s 39th Annual Health Law Professors Conference

June 2, 2016, 6:00pm

Wasserstein Hall, Milstein East (2036), Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

Reception to follow.

Free and open to the public, but seating is limited. Please register for the lecture and reception here.

Introduction by Martha Minow, Morgan and Helen Chu Dean and Professor, Harvard Law School

Moderator: I. Glenn Cohen, Professor of Law and Faculty Director of the Petrie-Flom Center, Harvard Law School

MAGAZINE- 12/17/03; Boston- Dr. Donald Berwick poses for a portrait at his Boston organization The Institute of Healthcare Improvement. Photo by Laurie Swope (DIGITAL IMAGE)

Donald Berwick, MD, is one of the United States’ leading advocates for high-quality healthcare. From July 2010 to December 2011, he served as the Administrator of the Centers for Medicare and Medicaid Services. For 22 years prior to that, he was the founding CEO – and now President Emeritus and Senior Fellow – of the Institute for Healthcare Improvement, a nonprofit dedicated to improving healthcare around the world. A pediatrician by background, he has also served on the faculties of the Harvard Medical School and the Harvard School of Public Health.

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