Henrietta Lacks and HeLa Cells: Impact on Biological Research and Informed Consent 

It's interesting how important Skloot's book has been on the scientific community and the questions revolving around informed consent.

04:22 - normal human cells have 46 chromosomes, HeLa cell have ~82 chromosomes - normal cells divide 50 times, HeLa cell has been dividing for ~70 years - there are over 2,000 human cell lines

34:51 Used because they can grow under bad conditions, and in large amounts that is helpful for purifying proteins and other molecules that only exist for a small amount in cells.

39:07 Started with concentration camps. *1947 - Nuremberg Code. International document stating that voluntary consent is mandatory for any clinical research. 1945-1966 the NIH found 2000 non-informed consent research projects 1964 - Declaration of Helsinki - a set of ethical principles regarding human experiment developed by World Medical Association. Not legally binding; undergone 6 revisions. Nobody overseeing. 1966 - initiation of independent institutional review boards 1979 - National Commision for the protection of human subjects (Belmont Report). Prompted in part by the Tuskegee Syphilis Study (1932-1972). A set of Guidelines were developed for ethical research and a mandatory IRB process was initiated.

11:12 HeLa cells are very easy to grow because minimal nutrients will sustain them.

What else they used these cells for? Did they grow the polio vaccines on theses cells? How many people developed cancer from these cells???

Fantastic presentation.

No guidelines doesn't imply anything goes.

50:24 2/3 lawsuit Greenberg vs. Miami Children's Research Institute Build up the data bank with children's sample, physician found enzyme and gene for Canavan disease and a pre-natal test for test was patented. The family funded and played a huge role, not informed and the patent was sold to a biotech company. Not getting any royalty. Decision - got monetary settlement because of their significant contribution and time and resources. 2003

Professor David Spector goofed by saying "the ONLY cell in the body without a nucleus is the mature red blood cells". This was a serious blunder even to a first year medical student. As a reminder, PLATELETS(or THROMBOCYTES), important cells in blood clots formation, also DO NOT have a nucleus!

Donors should be able to specify that their tissue samples must be entered into the public domain. There should be something like the GPL for tissue samples. It seems as though the courts were influenced by big pharmacy and big university.

44:45 Who owns the material? In 1999, the RAND Corporation published a report indicating that more than 307million tissue samples from more than 178 million people were stored in the USA. this number is increasing exponentially. The Common Rule, part of the Declaration of Helsinki (1981 update), sets forth the composition and function of institutional review boards (IRBs), but does not address the question of who owns human tissue used in research and it does not apply to tissue obtained postmortem. There are no clearly defined regulations regarding the ownership of human tissue samples and their fate. The ownership does not depend on whether a patient consented or not. No laws or regulations exist regarding ownership of leftover tissue, fluids, or tissue blocks. However, IRB approval is required for their use. In the case of tissue being excised for clinical purposes or donated for research, courts have determined that patients do not retain ownership rights of excised tissues.

Very interesting

53:11 3/3 lawsuit William Catalona vs. Washington University prostate cancer patients' tissue, collected by a researcher who want to move to Northwestern, were asked to be retain in WashU. He got the letters from all the patients that they allow him to use the tissue samples and transfer. Decision - the university, not the physician or the patient, owned the tissue. Used to help society.

I loved this video, very good talk.

35:04

Wonder if they're used in the new biologic drugs

35:31 Informed consent and Patient's rights No law was broken. That was the way to do things. Up until 1971 at Dr. Gey's retirement honoring ceremony, no one know who Henrietta Lacks was. In some cases, HeLa is referred to as Hele Lane to keep her anonymous. The family found out on a Rolling Stone magazine article. Cells from my mom, people making money, we can't afford health care, and we (by Rebecca, her daughter) would donate if we have known about it.

So useful as general education...