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Category Archives: Stem Cells

California Stem Cell Agency on Lacks: Informed Consent Cannot Remove All Questions

(Photo and caption from the stem cell agency blog item this morning.)
The $3 billion California stem cell
agency today weighed in on the Henrietta Lacks-NIH arrangement
restricting the use of her cell lines in research.
Writing on the agency's blog, Geoff
Lomax, the agency's senior officer for its standards group, noted
that the DNA sequence of her cell line was published without the
knowledge of her descendants. Lomax said,

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

Lomax continued,

“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

Posted in Stem Cell Therapy, Stem Cells | Comments Off on California Stem Cell Agency on Lacks: Informed Consent Cannot Remove All Questions

Skloots, Collins and More on Henrietta Lacks' Cell Line Deal

More details about the unprecedented
arrangement involving Henrietta Lacks' cell line emerged today in a
wide range of publications, including a Nature journal piece that
said it was not a precedent.
The article was co-authored by Francis
Collins, head of the NIH, and Kathy Hudson, deputy director for
science, outreach and policy at the NIH.

“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.”

The restrictions on use of the cell
lines came about after a flap erupted about their recent use without
the knowledge of her descendants. (The California Stem Cell Report carried a commentary on it yesterday.) Rebecca Skloots, author of the
best-seller, “The Immortal Life of Henrietta Lacks,” wrote about
the controversy in a March 23 op-ed piece in the New York Times. She
said,
In the article, Skloots said,

“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.'”

Nature also carried a Q&A with Collins in which he said,

“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.”

In the Wall Street Journal this
morning, Ron Winslow described the arrangement with the NIH like
this.

“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.”

In an interview in The Scientist,
Skloots, who was involved in the Lacks-NIH negotiations, said the
Lacks family asked for her participation.

“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.”

She continued, 

“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

Posted in Stem Cell Therapy, Stem Cells | Comments Off on Skloots, Collins and More on Henrietta Lacks' Cell Line Deal

Skloots, Collins and More on Henrietta Lacks’ Cell Line Deal

More details about the unprecedented
arrangement involving Henrietta Lacks' cell line emerged today in a
wide range of publications, including a Nature journal piece that
said it was not a precedent.
The article was co-authored by Francis
Collins, head of the NIH, and Kathy Hudson, deputy director for
science, outreach and policy at the NIH.

“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.”

The restrictions on use of the cell
lines came about after a flap erupted about their recent use without
the knowledge of her descendants. (The California Stem Cell Report carried a commentary on it yesterday.) Rebecca Skloots, author of the
best-seller, “The Immortal Life of Henrietta Lacks,” wrote about
the controversy in a March 23 op-ed piece in the New York Times. She
said,
In the article, Skloots said,

“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.'”

Nature also carried a Q&A with Collins in which he said,

“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.”

In the Wall Street Journal this
morning, Ron Winslow described the arrangement with the NIH like
this.

“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.”

In an interview in The Scientist,
Skloots, who was involved in the Lacks-NIH negotiations, said the
Lacks family asked for her participation.

“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.”

She continued, 

“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

Posted in Stem Cell Therapy, Stem Cells | Comments Off on Skloots, Collins and More on Henrietta Lacks’ Cell Line Deal

The Henrietta Lacks Story and Eggs, Money and Motherhood

The legacy of Henrietta Lacks popped up
again today in a piece in the New York Times that should
resonate among stem cell researchers and within the stem cell
industry.
It even has a current hook involving
California legislation to permit women to sell their eggs for the
purposes of scientific research – a bill that is now on the desk of
Gov. Jerry Brown.
The issues in the Lacks saga involve ownership of human
cells, trafficking in them and informed consent, all of which surface in one form or another in the state legislation.
But first a refresher on Henrietta
Lacks. She was an African-American woman who died in 1951 of cervical
cancer at the age of 31. Shortly before her death, physicians removed
some of her tumor cells, and, as recounted in today's NYTimes article
by Carl Zimmer,

“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.”

But Lacks never consented to her cells'
being studied, a situation not uncommon at the time, nor did her
family know about the situation until 1973. The complete story was
chronicled in 2010 in a best-selling book, “The Immortal Life of
Henrietta Lacks," by Rebecca Skloot.
Zimmer noted in today's article,

“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.”

The particulars involving her genome
are in Zimmer's story. But the article implicitly raises anew
questions that make many scientists uncomfortable. Often they contend
that the situation involving Lacks could not occur today because of
higher ethical standards. Standards ARE higher today. But problems
continue to arise in the scientific community, including the sale a few years ago of willed body parts at UCLA for $1.5 million to private medical companies.
Development of products based on human
stem cells promises even greater rewards, with billion-dollar
blockbuster therapies not out of the range of possibilities. Profit
and the desire to record a stunning research triumph are powerful
motivators. They can lead to short cuts and dubious practices, such
as seen in the Korean stem cell scandals of 2006.
So we come to whether women who donate
their eggs for stem cell research can give truly informed consent
when they surrender all rights to whatever products may result from
parts of their bodies, as is common on such consent agreements. Or
for that matter, what about the men who give up adult cells for
reprogramming to a pluripotent state? Can they really understand the
likelihood of a billion dollar product being generated with the help
of their contribution? On the other hand, can the donors also truly
understand that they are probably more likely to be struck by
lightning than have their body parts result in a medical blockbuster?
These considerations may seem
insignificant to some in science. But to grasp their full
implications, one only has to read a few of the nearly 200 reader
comments today on Zimmer's article today. Here is a sample.
From Frank Spencer-Molloy in
Connecticut:

“(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.”

From Robbie in New York City:

“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.”

From Julia Himmel in New York City:

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

The pay-for-eggs legislation (AB926)
now before Gov. Brown requires informed consent from those who
provide eggs. Opponents of the measure, however, argue that truly
informed consent from some women could be actually impossible because
of economic pressures felt by the women. Writing in The Sacramento Bee last month, Diane Tober and Nancy Scheper-Hughes said,

“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?”

Even the fertility industry group
sponsoring the legislation acknowledges that informed consent can be
problematic. A 2012 news release from the American Society for
Reproductive Medicine said, 

“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.”

The story of the treatment of Henrietta
Lacks and her descendants is a poor commentary on science and
medicine. Yet it resonates with the public, which is keenly sensitive
to scientific and medical abuses, even in situations that did not
appear to be abuses at the time.

Stem cell research already is burdened by its own
particular moral and religious baggage. With
commercialization of new, pluripotent stem cell therapies coming ever
closer, the last thing the field needs is contemporary version of the
Lacks affair. It would behoove researchers and the stem cell industry
to walk with more than normal care as they manipulate products that
are tied inextricably to visions of both motherhood and money.  

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

Posted in Stem Cell Therapy, Stem Cells | Comments Off on The Henrietta Lacks Story and Eggs, Money and Motherhood

Californians Top List of Stem Cell Honorees

Californians dominated the list of those to be honored at the World Stem Cell Summit coming up in San
Diego this December.
They include fellow blogger Paul
Knoepfler, a stem cell scientist at UC Davis, and Roman Reed, the San Francisco Bay Area stem cell activist and son of another stem cell advocate, Don Reed. Both are among the 2013 Stem Cell Action Award honorees for this
year.
Others include Denny Sanford, a
philanthropist whose name now adorns the Sanford-Burnham Institute in
La Jolla, and Malin Burnham, who is also linked to the institute.
Also being honored is Mary Ann Liebert, whose firm publishes
peer-reviewed journals in science and biomedical research.
Malin is a San Diego businessman who
joined with an anonymous donor in 1996 to contribute $10 million to
the La Jolla Cancer Foundation. It was renamed to reflect that
contribution. In 2010, Sanford pledged $50 million to the
organization, and it was renamed again.

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/1ThJSyU8BBU/californians-top-list-of-stem-cell.html

Posted in Stem Cell Therapy, Stem Cells | Comments Off on Californians Top List of Stem Cell Honorees

Memorial Services Friday for Duane Roth, Co-vice chairman of the California Stem Cell Agency

A memorial service for Duane Roth,
co-vice chairman of the California stem cell agency, will be held
Friday at 11 a.m. at Immaculata Church at the University of San
Diego.
Roth died Saturday from injuries
suffered in an accident last month while bicycling in the mountains
east of San Diego. He was 63.
San Diego has seen an outpouring of
tributes in the wake of Roth's death for his contributions to the
community in the life sciences, philanthropic and technology areas.
He had served on the stem cell agency board since 2006 and had been
scheduled to become of chairman of the Sanford-Burnham Institute this
fall. He was CEO of Connect, a non-profit organization aimed at
support entrepreneurship in the technology field.
Ted Roth, Duane's brother, remembered him in a piece in the San Diego U-T as the oldest of five sons growing up in Wayland, Iowa. Ted Roth wrote that their parents relied on Duane "to set an example for his brothers, and he
was the one they called upon in their later years. He was a lifelong
mentor and friend to his brothers, someone that was always there to
share in life’s experiences." 
Ted also wrote about his brother's involvement in technology and business.

 "Duane was captivated by the possibilities that innovation provides in improving the world in which we live." 

The
family has
suggested that in lieu of flowers that donations be made to the Otterson Fund at Connect, Challenged Athletes Foundation or the Copley-Price Family YMCA.
Here are links to some of the other recent
articles on Roth: San Diego U-T (see here and here), La Jolla Patch,
La Jolla Light.

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/Bui3CXvil70/memorial-services-friday-for-duane-roth.html

Posted in Stem Cell Therapy, Stem Cells | Comments Off on Memorial Services Friday for Duane Roth, Co-vice chairman of the California Stem Cell Agency