“It is important to note, however,
that we are responding to an extraordinary situation here, not
setting a precedent for research with previously stored,
de-identified specimens. The approach we have developed through
working with the Lacks family is unique because HeLa cells were taken
and used without consent, and gave rise to the most widely used human
cell line in the world, and because the family members are known by
name to millions of people.”

“Imagine if someone secretly sent
samples of your DNA to one of many companies that promise to tell you
what your genes say about you. That report would list the good news
(you’ll probably live to be 100) and the not-so-good news (you’ll
most likely develop Alzheimer’s, bipolar disorder and maybe
alcoholism). Now imagine they posted your genetic information online,
with your name on it. Some people may not mind. But I assure you,
many do: genetic information can be stigmatizing, and while it’s
illegal for employers or health insurance providers to discriminate
based on that information, this is not true for life insurance,
disability coverage or long-term care.

“'That is private family
information,” said Jeri Lacks-Whye, Lacks’s granddaughter. “It
shouldn’t have been published without our consent.'”

“This has wrapped in it science,
scientific history, ethical concerns, the bringing together of people
of very different cultures, a family with all the complications that
families have.”

“Under the pact, two descendants of
Ms. Lacks will serve on a six-member panel with scientists to review
proposals from researchers seeking to sequence the DNA of cell lines
derived from her tumor or to use DNA profiles of such cells in their
research. That gives family members a highly unusual voice in who
gets access to personal health information.

Terms call for controlled access to the
genomic data and credit to the Lacks family in papers and scientific
presentations based on the research done with the DNA data.”

“The only reason I was involved in
this is because scientists did this without the family’s consent
and then it got all of this press coverage, and no one asked the
question, 'Did the family give consent?' So I sort of waded back
in.”

“That OpEd that I
wrote was the first time I’d ever publicly expressed an opinion,
which was, 'Really?!? Are we going to continue to not ask the Lacks
family questions?' I was kind of shocked in a sense that nobody
thought to raise that issue.”

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/7XRzMDgIWjo/skloots-collins-and-more-on-henrietta.html

(Photo and caption from the stem cell agency blog item this morning.)

“The family was understandably upset
by the lack of consultation and in response the research team removed
the genome data from public access.”

“CIRM has benefited from these
efforts. We are currently supporting an initiative to collect tissue
samples from thousands of people with a range of incurable diseases
and create reprogrammed iPS cells from those tissues (here's
more about that initiative). These cells will be a resource for
scientists worldwide working to understand and treat diseases. Part
of this initiative includes a consent process to make sure people who
donate fully understand how their cells will be used. (This process
is formally called informed consent.) 

“The informed
consent process includes a form that identifies the purposes of the
research and describes the way cells will be used. We are also
developing education materials that will help potential donors
quickly and easily understand the basic aspects of research that will
be conducted with those cells. The end result of this collaboration
with our grantees will be a process that is truly informative to
donors.

“The informed consent process can’t entirely
eliminate all future questions on the part of the donor, but it does
ensure that donors have a chance to understand how their cells will
be used and what information will be made public—something
Henrietta Lacks and her family never had.”  

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/8PQGYcYpszg/california-stem-cell-agency-on-lacks.html

“It is important to note, however,
that we are responding to an extraordinary situation here, not
setting a precedent for research with previously stored,
de-identified specimens. The approach we have developed through
working with the Lacks family is unique because HeLa cells were taken
and used without consent, and gave rise to the most widely used human
cell line in the world, and because the family members are known by
name to millions of people.”

“Imagine if someone secretly sent
samples of your DNA to one of many companies that promise to tell you
what your genes say about you. That report would list the good news
(you’ll probably live to be 100) and the not-so-good news (you’ll
most likely develop Alzheimer’s, bipolar disorder and maybe
alcoholism). Now imagine they posted your genetic information online,
with your name on it. Some people may not mind. But I assure you,
many do: genetic information can be stigmatizing, and while it’s
illegal for employers or health insurance providers to discriminate
based on that information, this is not true for life insurance,
disability coverage or long-term care.

“'That is private family
information,” said Jeri Lacks-Whye, Lacks’s granddaughter. “It
shouldn’t have been published without our consent.'”

“This has wrapped in it science,
scientific history, ethical concerns, the bringing together of people
of very different cultures, a family with all the complications that
families have.”

“Under the pact, two descendants of
Ms. Lacks will serve on a six-member panel with scientists to review
proposals from researchers seeking to sequence the DNA of cell lines
derived from her tumor or to use DNA profiles of such cells in their
research. That gives family members a highly unusual voice in who
gets access to personal health information.

Terms call for controlled access to the
genomic data and credit to the Lacks family in papers and scientific
presentations based on the research done with the DNA data.”

“The only reason I was involved in
this is because scientists did this without the family’s consent
and then it got all of this press coverage, and no one asked the
question, 'Did the family give consent?' So I sort of waded back
in.”

“That OpEd that I
wrote was the first time I’d ever publicly expressed an opinion,
which was, 'Really?!? Are we going to continue to not ask the Lacks
family questions?' I was kind of shocked in a sense that nobody
thought to raise that issue.”

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/7XRzMDgIWjo/skloots-collins-and-more-on-henrietta.html

“They later discovered that the cells
could thrive in a lab, a feat no human cells had achieved before.

"Soon the cells — nicknamed HeLa cells
— were being shipped from Baltimore around the world. In the 62
years since — twice as long as Ms. Lacks’s own brief life — her
cells have been the subject of more than 74,000 studies, many of
which have yielded profound insights into cell biology, vaccines, in
vitro fertilization and cancer.”

“For 62 years, (Lacks') family has
been left out of the decision-making about that research. Now, over
the past four months, the National
Institutes of Health has come to an agreement with the Lacks
family to grant them control over how Henrietta Lacks’s genome is
used.”

“(T)the Lacks family was robbed.
Scores of companies profited to the tune of tens of millions of
dollars from products they made derived from Henrietta Lacks'
cancerous cells. Maybe this will provide some impetus to a wider
consideration of the rights patients are entitled to when their
tissues are cloned and disseminated to other researchers and
ultimately put to use in profit-making ventures.”

“At the very least, this family needs
to be financially compensated for the anguish of their discovery and
for the time and energy they've put into pursuing their rights. In my
opinion, they also deserve a portion of any commercial gain that's
been made using the HeLa cells. It is only through having to give
away money that the powerful learn manners.”

“It is absolutely true that
scientists have had a blind spot when it came to the human element of
the HeLa cells.”

“Allowing a market in eggs for
research would reach beyond the current pool to target women who may
be motivated by dire need. How many low-income women might consider
selling their eggs, multiple times, to feed their children or pay the
rent?”

“Prospective egg donors must
assimilate a great deal of information in the informed consent
process, yet it remains difficult to determine the extent of their
actual understanding of egg donation and its potential risks.”

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/oncdCzO4V18/the-henrietta-lacks-story-and-eggs.html