The Immortal Life Of Henrietta Lacks By Rebecca Skloot

The Health Insurance Portability and Accountability Act of 1996, HIPAA, is a common term heard around health care today. HIPAA, a privacy rule to protect a person’s health information, is one of the first things that came to my mind when I read The Immortal Life of Henrietta Lacks. This book, written by Rebecca Skloot, was published in 2010, which was after HIPAA was enacted. The story of Henrietta Lacks starts long before HIPAA, and her name was leaked as the source of what became well-known as HeLa cells. HeLa cells are cancer cells that were removed from Henrietta’s cervix, and were subsequently utilized in research for numerous medical discoveries. The dilemma is, Henrietta herself had no knowledge of this when she was alive, nor did any

The tissue that was surgically removed was given to George Gey, head of the tissue culture research. Gey had been trying to grow malignant cells that were removed from the body, but had been unsuccessful. This changed the day Henrietta’s cells arrived in his lab. Her cells were labeled HeLa, representing the first 2 letters of her first and last name. The HeLa cells not only survived, they grew intensely and kept right on growing as much as their given space would allow. It seemed like the cells would never stop growing, thus came the label of the immortal cells (Skloot, 2010). HeLa cells became a very important part of scientific research, and Henrietta’s name became well-known among Gey’s colleagues. On November 2, 1953, the real name behind the HeLa cells was leaked by the press, but they got it wrong, Henrietta Lakes was reported as the source of the cells in the Minneapolis Star. Gey and Dr. TeLinde, the cervical cancer specialist at John Hopkins, decided to allow their story about Henrietta to be told in a more accurate account, but they wanted to withhold her name. Around this time confidentiality was starting to become a standard of practice, but there were no actual laws, and TeLinde was concerned about the consequences. In the end, on May 14, 1954, the article was published in Collier’s and her name was published as Helen L. After that article was published, The

HIPAA’s “…major goal of the Privacy Rule is to assure that individuals’ health information is properly protected while allowing the flow of health information needed to provide and promote high quality health care and to protect the public's health and wellbeing” (U.S. Department of Health & Human Services, 2013, p. 3). According to an article on “Ownership and Use of Tissue Specimens for Research,” written by Rina Hakimian, JD, MPH David Korn, MD in 2004, “Although the Health Insurance Portability and Accountability Act does not address ownership or the use of tissue samples per se, when tissue is accompanied by clinical information containing specified patient identifiers, the samples and information may constitute protected health information depending on whether it is held by a covered entity” (Hakimian & Korn, 2004, p.