Tag Archives: commercialization of DNA

Who Owns your Cells? the case of Henrietta Lacks

In 1951, a young mother of five named Henrietta Lacks visited The Johns Hopkins Hospital complaining of vaginal bleeding….As medical records show, Mrs. Lacks began undergoing radium treatments for her cervical cancer…. A sample of her cancer cells retrieved during a biopsy were sent, without her knowledge or consent, to Dr. George Gey’s nearby tissue lab. For years, Dr. Gey, a prominent cancer and virus researcher, had been collecting cells from all patients who came to The Johns Hopkins Hospital with cervical cancer, but each sample quickly died in Dr. Gey’s lab. What he would soon discover was that Mrs. Lacks’ cells were unlike any of the others he had ever seen: where other cells would die, Mrs. Lacks’ cells doubled every 20 to 24 hours.

Today, these incredible cells— nicknamed “HeLa” cells, from the first two letters of her first and last names — are used to study the effects of toxins, drugs, hormones and viruses on the growth of cancer cells without experimenting on humans. They have been used to test the effects of radiation and poisons, to study the human genome, to learn more about how viruses work, and played a crucial role in the development of the polio vaccine.

In July 2021, the family of Henrietta Lacks has hired a prominent civil rights attorney, who says he plans to seek compensation for them from big pharmaceutical companies across the country that made fortunes off medical research with her famous cancer cells…The legal team is investigating lawsuits against as many as 100 defendants, mostly pharmaceutical companies, but they haven’t ruled out a case against the Johns Hopkins Hospital.’

Excerpts from Family of Henrietta Lacks hires civil rights attorney to seek funds over famous cells, Washington Post, July 31, 2021, and https://www.hopkinsmedicine.org/henriettalacks/

Genomic Surveillance

The use of DNA profiling for individual cases of law enforcement has helped to identify suspects and to exonerate the innocent. But retaining genetic materials in the form of national DNA databases, which have proliferated globally in the past two decades, raises important human rights questions.

Privacy rights are fundamental human rights. Around the world, the unregulated collection, use, and retention of DNA has become a form of genomic surveillance. Kuwait passed a now-repealed law mandating the DNA profiling of the entire population. In China, the police systematically collected blood samples from the Xinjiang population under the guise of a health program, and the authorities are working to establish a Y-chromosome DNA database covering the country’s male population. Thailand authorities are establishing a targeted genetic database of Muslim minorities. Under policies set by the previous administration, the U.S. government has been indiscriminately collecting the genetic materials of migrants, including refugees, at the Mexican border.

Governments should reform surveillance laws and draft comprehensive privacy protections that tightly regulate the collection, use, and retention of DNA and other biometric identifiers .They should ban such activities when they do not meet international human rights standards of lawfulness, proportionality, and necessity.

Excerpts from Yves Moreau and Maya Wong, Risks of Genomic Surveillance and How to Stop it, Science, Feb. 2021

A Way to Monetize African People: their DNA

Whistleblowers who formerly worked at the Cambridge-based Wellcome Sanger Institute claimed in October 2019 the institute wanted  to use the DNA samples it obtained from universities across Africa to make money.  They said staff there planned to build a medical research tool, gene chips , based on the DNA, which it could then have sold commercially.

As a result the Stellenbosch University in Western Cape has called for the Sanger Institute to return the DNA samples to the African universities it got them from.  Critics argued the people who donated the samples – members of indigenous communities such as the Nama people – did not consent to it being used this way.    The DNA samples were collected by various African universities and the Lebanese American University in Beirutl.  The samples were shared under so-called ‘material transfer arrangements.’   DNA donors included members of indigenous communities — such as the Nama people of Botswana, Namibia, Uganda, and South Africa.

Participants were reportedly told samples would only be used to study ‘population history and human evolution.’…  The Stellenbosch University in South Africa reportedly wrote that it had provided DNA samples from the Nama people ‘to be used solely for research purposes.’  ‘It was recently brought to [the university’s] attention that […] the Wellcome Sanger Institute intends to proceed with commercialisation of the research, data and Nama DNA,’ they continued.  ‘This conduct of the Wellcome Sanger Institute raises serious legal and ethical consequences.

South African scientists demand the return of hundreds of tribal DNA samples after a British institute was accused of trying to use them to make money, Daily Mail, Oct. 14, 2019