Americans Have the Right of Consent to the Use of Their Own Genetic Material
ST. PAUL, Minn. — Last week, the family of Henrietta Lacks and their legal team announced that a confidential settlement with biotech giant Thermo Fischer Scientific had been reached. Ms. Lacks had not provided her consent before her cells were used for medical research over the span of decades.
Key questions asked in the 72 years since Ms. Lacks’ death have been whether Americans own their genetic material and whether they have the right to give or withhold consent before government officials and third parties procure, distribute, and sell their genetic information. The announcement of this settlement near Baltimore’s Johns Hopkins Hospital, where Ms. Lacks died from cancer in 1951, was a significant win in the critical battle over genetic ownership.
“Our bodies are not public property. A whole host of individuals and businesses seek to profit off the DNA and genome of Americans, both young and old. Henrietta Lacks was violated when her tissues and cells were harvested without her consent. This ruling is a win for genetic privacy rights and DNA ownership.” says Twila Brase, RN, PHN, president and co-founder of Citizens’ Council for Health Freedom.
Citizens’ Council for Health Freedom (CCHF) has long championed the issues of genetic ownership and individual consent. Since 2003, CCHF has led the charge to implement real, meaningful parental consent requirements for researcher and state use and sharing of state-stored newborn DNA and genetic test results.
This past June, CCHF worked with Montana State Senator Daniel Zolnikov to introduce SB 351, the Genetic Information Privacy Act, and initiated a successful grassroots campaign urging Governor Greg Gianforte to sign the bill into law. Companies like Ancestry.com and 23andMe must now obtain consent before sharing Montana residents’ genetic data with third parties.
The Lacks settlement is a vital win in the name of health freedom. Americans have gained ground in the fight to maintain control over their genetic material, advancing genetic privacy and ownership rights nationwide.
