For more than half a century, cells from an ordinary woman have
made some extraordinary scientific discoveries, helping to aid
research that ranged from the polio vaccine to
Parkinson's disease. That woman was Henrietta Lacks and her
tumor cells were the source of the HeLa cell
Despite the significant contribution to science resulting from
her cells, neither Henrietta Lacks,
nor her family, had any idea that her cells would be used for
research. Thus, her case has led to countless discussions about
informed consent and what should be done to protect the anonymity
of other cells used for research purposes.
A New Chapter in Her Story
The Henrietta Lacks case took an interesting turn on August 7,
2013 when the National Institutes of Health (NIH) announced that
the full genetic information for HeLa cells would now be stored in
NIH database. Researchers wishing to access the entire HeLa
cell genetic sequence will have to submit an
application to a committee-a committee that includes two
descendants of Henrietta Lacks.
Who was Henrietta Lacks?
Henrietta Lacks was an African American woman of low-income and
a sixth grade education. She was survived by five children and her
husband when she died of an aggressive case of cervical cancer in
1951 at the age of 31.
Until the 1970s, her husband and children would not even learn
about HeLa cells, including the fact that cells were taken from
Henrietta, without her knowledge, and used-repeatedly. The family
has since then wrestled with
the news of the existence of HeLa cells.
What are HeLa Cells?
HeLa cells are not only the first human cells that survived and
vitro, but they are also still
used today to lead further breakthroughs in vaccination, cancer
research, and genomics, among others. HeLa cells were derived from
a biopsy of Henrietta lacks' cervical cancer cells.
History of Informed Consent
informed consent and anonymity are considered norms in
present-day scientific research, this was not always the case.
Informed consent as we know it today evolved after decades of legislation
and policy reforms. Had Henrietta been alive today, her
identity would remain private and efforts would be made to educate
and inform her about research. She was afforded no such
consideration and protection in 1951 because it simply wasn't a
standard part of medical and research practice.
Potential Reforms in Informed Consent
In March 2013, the issue of informed consent and full disclosure
re-emerged for the Lacks family when a HeLa cell line's genetic
sequence was published without prior authorization from Henrietta
Lacks' descendants. This further compromised the family's
privacy, as genetic information about Henrietta Lacks' cancerous
cells-even generations into the cell line-provided information
family's current genetic traits.
Soon after, NIH and the Lacks family entered into
discussions that culminated in the agreement announced earlier
Kathy Hudson and Francis
Collins of NIH explained this decision, including the need to
reevaluate current standards of informed consent.
Although technology continues to advance, informed consent
policies are not keeping up, leading to real bioethical
implications. As generating and sharing genetically based data
becomes prevalent, if an individual provides informed consent for
his or her biological material to be used in research, he or she
may not fully understand how his
or her family's privacy could become compromised in addition to
their own. The Lacks' are still dealing with the aftermath of
HeLa, thereby demonstrating the importance of understanding how
genomics are changing the scope of what it means to be informed and
what it means to give consent.