Who Owns Your DNA?

On January 29, 1951 a poor, black tobacco farmer from rural Virginia named Henrietta Lacks entered the, “colored” ward of Johns Hopkins Medical Center in Baltimore, Maryland.  Only 30 years old and mother of 5 children, she was diagnosed with cervical cancer and would die in less than a year. 

            Henrietta Lacks was the product of her times.  Suffering the institutionalized discrimination of pre-Civil Rights era America, she lacked both education and cultural protection.  She bore her first child at age 14.  Her husband, who was also her first cousin, infected her with gonorrhea and syphilis.   But Henrietta was also a protective and loving mother, a good friend, and a fun-loving, attractive woman.  She loved to dance, was a good cook, and a hard worker.   None of this helped her fight cancer.

            She was given state of the art treatment at Johns Hopkins.  That treatment included, as was standard, extraction of cancerous cells for examination.  Henrietta’s cells, scraped from her cervix, were sent to a laboratory in the basement of Johns Hopkins Hospital where Dr. George Otto Gey was trying to culture cells for research.  To Gey’s amazement, Henrietta’s cells could do something that was considered the stuff of science fiction—they could live forever.  They have lived forever.  Henrietta’s cells, code named HeLa, are living still.  They played a part in the creation of the Salk polio vaccine.  They have been in space. 

            To understand how important these immortal cells are, you need to know that despite every effort of skilled doctors and researchers around the world, no cell had been made to live for more than a few days in any lab.  You can’t do reliable research on different cells.  For the first time, and for reasons we still do not understand, Henrietta Lacks was able to produce cells that would not die, and all of our lives are touched in some golden way by her unknowing gift to mankind. 

            Her story has been lovingly and accurately told in the book, The Immortal Life of Henrietta Lacks by Rebecca Skloot.  My book club read it this year and I heartily recommend it to you.  But, as interesting as the tale of Ms. Lacks’ life is, the most compelling part of the story deals with a question of medical ethics.   You see, neither Henrietta nor her family, were ever asked for a sample of her cells.  None of her children knew about HeLa cells and the way they changed the world.  While Dr. Gey gave the cell line away to anyone who asked for it, the cells eventually made their way to large bio-labs who sold these prolific cells.  They sold billions of them.  None of that money ever went to the Lacks children or grandchildren.

            I thought immediately of Henrietta and her immortal cells on Thursday, June 13 when the Supreme Court ruled that your DNA belongs to you.

            Doesn’t that sound like an obvious statement?  Evidently not; because the Court was asked to rule on whether Myriad, a huge biotechnology corporation, “owned” the BRCA1 gene.  This gene plays a key role in the development of breast and ovarian cancer.  Speaking for the Court, Justice Clarence Thomas wrote, “We hold that a naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated.”

            A company may patent a process for extracting a gene, or a synthetic copy of a gene, or a way to use the gene, but our DNA belongs to us despite current patents on about one quarter of all of our genes. 

            Sleep well Henrietta, we’ll keep the faith.