Cast of Characters

 

Immediate Lacks Family:

The Lacks Family

David “Day” LacksHenrietta Lacks’ husband and cousin

David Jr. “Sonny” LacksHenrietta and Day’s third child

Deborah “Dale” LacksHenrietta and Day’s fourth childDeborah

Elsie Lacks (born Lucille Elsie Pleasant)Henrietta’s second born and eldest daughter. She was institutionalized due to epilepsy and died at age 15

Eliza Lacks PleasantHenrietta’s mother. She died when Henrietta was four.

Gladys LacksHenrietta’s sister, who disapproved of Henrietta’s marriage to Day.

Johnny PleasantHenrietta’s father. He left his ten children when their mother died.

Lawrence LacksHenrietta and Day’s first born.

Loretta PleasantHenrietta’s birth name.

Tommy LacksHenrietta and Day’s grandfather who raised both of them.

Zakariyya Bari Abdul Rahman (born Joe Lacks)Henrietta and Day’s fifth child. Henrietta was diagnosed with cervical cancer shortly after his birth.

 

Extended Lacks Family

Albert LacksHenrietta’s white great-grandfather. He had five children by a former slave named Maria and left part of the Lacks plantation to them. This section became known as “Lacks Town.” (p.329)

Alfred “Cheetah” CarterDeborah’s first husband. The marriage was abusive and ended in divorce.

Alfred Jr.Deborah and Cheetah’s firstborn child and Little Alfred’s father.

Bobette LacksLawrence Lacks’ wife. She helped raise Lawrence’s siblings after Henrietta’s death, and advocated for them when she discovered they were being abused.

Cliff GarretHenrietta’s cousin. As children, they worked the tobacco fields together.

“Crazy Joe” GrinnanHenrietta’s cousin who competed unsuccessfully with Day for her affection.

Davon MeadeDeborah’s grandson who often lived with and took care of her.

EthelGalen’s wife, an abusive caregiver to Henrietta’s three youngest children.

Fred GarretHenrietta’s cousin who convinced Day and Henrietta to move to Turner Station.

GalenHenrietta’s cousin. He and his wife, Ethel, moved in with Day after Henrietta’s death to help take care of the children. He ended up abusing Deborah.

Gary LacksGladys’s son and Deborah’s cousin. A lay preacher, he performed a faith healing on Deborah.

LaTonyaDeborah and Cheetah’s second child; Davon’s mother.Deborah Family

“Little Alfred”Deborah’s grandson.

Margaret SturdivantHenrietta’s cousin and confidante. Henrietta went to her house after radiation treatments at Johns Hopkins.

Reverend James PullumDeborah’s second ex-husband, a former steel-mill worker who became a preacher.

Sadie SturdivantMargaret’s sister, Henrietta’s cousin and confidante, whe supported Henrietta during her illness. She and Henrietta sometimes sneaked out to go dancing.

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Articles about the Lacks family, see “Miracle of HeLa,” Ebony (June 1976); also see “Family Takes Pride in Mrs. Lacks’ Contribution,” Jet (April 1976), p.347

For the paper that first mentioned Henrietta Lacks’ real name, see H. W. Jones, V. A. McKusick, P.S. Harper, and K.D. Wuu, “George Otto Gey (1889-1970): The HeLa Cell and a Reappraisal of Its Origin,” Obstetrics and Gynecology 38, no.6 (December 1971); and J. Douglas, “Who Was HeLa?” Nature 242 (March 9, 1973); J. Douglas, “HeLa,” Nature 242 (April 20, 1973), and B. J. C., “HeLa (for Henrietta Lacks),” Science 184, no.4143 (June 21, 1974).

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Afterword, pp.315-347

pp.365-366.

Use of human tissues in research, and the ethical and policy debate surrounding it, is huge. See the following:

Related lawsuits case studies pp.365-366.

Names of Scientists: Cofield, phony science (p.311)

Explores changes in science from the 1960s forward; what cells are used for, etc.

Writers who have written on HeLa (pp.339-340):

Michael Gold, A Conspiracy of Cells (about the contamination story, pp.339-340). He published details from Henrietta Lacks’s medical records and autopsy report without permission from the Lacks family.

Michael Rogers (1976), Rolling Stone article about HeLa (p.340). Reporter who was the first journalist to contact the Lackses.

Harriet Washington, Medical Apartheid. She interviewed the Lacks family for a 1994 Emerge article

Ethan Skerry and Lowenstein Sandler. PCthey helped Rebecca Skloot establish the Henrietta Lacks Foundation (they did pro-bono work, p.340)

Donald Deflerhe introduced Rebecca Skloot to information on Henrietta Lacks (p.340)

Hannah Landecker, Culturing Life - She worked with Nathaniel Comfort on HeLa and the history of cell culture (p.340)

Other sources worth consulting:

Vincent Racaniello- He communicated importance of providing science to the general public in an accurate and accessible manner. For more on his influence, see his “This Week in Virology” podcasts at T.W.V. tv and his twitter feed @ profvrr (great model for other scientists). Also see David Kroll (Abelpharmboy). He writes about science on his blog, Scienceblogs.com/terrasig.

Courtney “Mama” Speedresident of Turner Station and owner of Speed’s Grocery. She organized an effort to build a Henrietta Lacks museum.

John Moorecancer patient who unsuccessfully sued his doctor and the regents of the University of California over the use of his cells to create the Mo cell line. (p.332). See chapter 25: “Who Told You You Could Sell My Spleen?” Deals with the case of John L. Moore, notes, (pp.360-361). Vast literature on this subject.. See the Mo-cell patent is no.4,438,032, available at Patft.uspto.gov.

Media coverage is extensive too

Regulatory responses to the Moore case are…

Cell ownership issues

 

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Sir Lord Keenan Kester Cofieldattempted to sue John Hopkins and the Lacks family.

Ted Slavina hemophiliac whose doctor told him his cells were valuable. He founded Essential Biologicals, a company that sold his cells, and later cells from other people so individuals could profit from their own biological materials.

Institutions to consult:

 

Legal Issues: Informed Consent

 

Litigation

Suits Pending

Cases Unresolved: (2005) Native American Havasupai Tribe sued Arizona State University (about diabetes tests), p.319.

(2005) Washington University in litigation for years, p.319.

Health Insurance Portability and Accountability Act (HIPAA) of 1996. Called a clear federal law, p.319.

Center for Biomedical Ethics and Society at Vanderbilt University

Institute for Science, Law and Technology at the Illinois Institute of Technology

Spanish flu pandemic, p.320 (compare this to 1918 epidemic that killed 20 million, p.320)

Diagnostic Molecular Pathology Laboratory at the University of California, Los Angeles, p.321.

On Andrews v. Korn (pp.320-321)

On gene patents (p.323)

Myriad Genetics (pp.323-324); 2009 suit against Myriad Genetics (about breast cancer gene patents, p.336).

Comparing Ted Slavin, John Moore, and Henrietta Lacks (pp.326-327); looks at the pressing issue of informed consent

President Clinton’s National Bioethics Advisory Commission (NBAC), 1999 (p.327)

Post Moore case, p.327.

Estimates of HL cells, p.328.

Members of the Medical and Scientific Community (pp.331-332); begins with Alexis Carrel and ends with Walter Nelson-Rees:

Alexis CarrelFrench surgeon and Nobel Prize recipient who claimed to have cultured “immortal” chicken-heart cells

Chester Southamcancer researcher who conducted unethical experiments to see whether or not HeLa could “infect” people with cancer

Christoph Lengauercancer researcher at Johns Hopkins who helped develop FISH, a technique used to detect and identify DNA sequences, and who reached out to members of the Lacks family

Emanuel Mandeldirector of medicine at the Jewish Chronic Disease Hospital (JCDH) who partnered with Southam in unethical experiments

Dr. George Geyhead of tissue-culture research at Johns Hopkins. He developed the techniques used to grow HeLa cells from Henrietta Lacks’ cancer tissue in his lab

Howard JonesHenrietta Lacks’ gynecologist at Johns Hopkins. For information on her diagnosis see Howard W. Jones, “Record of the First Physician to see Henrietta Lacks at the Johns Hopkins Hospital: History of the Beginning of the HeLa Cell Line,” American Journal of Obstetrics and Gynecology 176, no.6 (June 1997): S227-S228.

Leonard HayflickMicrobiologist who proved that normal cells die when they’ve doubled about fifty times. This is known as the Hayflick limit.

Margaret GeyGeorge Gey’s wife and research assistant. She was trained as a surgical nurse

Mary KubicekGeorge Gey’s lab assistant who cultured HeLa cells for the first time

Richard Wesley TeLindeone of the top cervical cancer experts in the country at the time of Henrietta Lacks’ diagnosis. His research involved taking tissue samples from Henrietta Lacks and other cervical cancer patients at John Hopkins.  For his research on carcinoma in situ and invasive carcinoma, and his concern about unnecessary hysterectomies, see his essay “Hysterectomy: Present-Day Indications,” Journal of the Michigan State Medical Society  (July 1949); G. A. Gavin, H. W. Jones, and R. W. TeLinde, “Clinical Relationship of Carcinoma in Situ and Invasive Carcinoma of the Cervix,” Journal of the American Medical Association 149, no.8 (June 2, 1952); R. W. TeLinde, H.W. Jones, and G. A. Gavin, “What Are the Earliest Endometrial Changes to Justify a Diagnosis of Endometrial Cancer?” American Journal of Obstetrics and Gynecology 66, no.5 (November 1953); and TeLinde, “Carcinoma in Situ of the Cervix,” Obstetrics and Gynecology 1, no.1 (January 1953). Also consult Howard W. Jones, Georgeanna Jones, and William E. Ticknor, Richard Wesley TeLinde (a biography of TeLinde).

Roland Pattilloprofessor of gynecology at Morehouse School of Medicine who was one of George Gey’s only African American students. He organizes a yearly HeLa conference at Morehouse in Henrietta Lacks’ honor.

Stanley Gartlerthe geneticist who dropped the “HeLa bomb” when he proposed that many of the most commonly used cell cultures had been contaminated by HeLa

Susan Hsuthe postdoctoral student in Victor McKusick’s lab who was assigned to make contact with the Lackses and request samples from them for genetic testing without informed consent

Victor McKusickgeneticist at Johns Hopkins who conducted research on samples taken from Henrietta Lacks’ children without informed consent to learn more about HeLa cells

Walter Nelson-Reesthe geneticist who tracked and published the names of cell lines contaminated with HeLa without first warning the researchers he exposed. He became known as a vigilante.

Research Places Cited: pp.338-339

Scientists Cited: pp.339-340

Alan Mason Chesney Medical Archives (AMCMA) at Johns Hopkins Medical School

The Tissue Culture Association Archives (TCAA) at the University of Maryland, Baltimore County