Download Henrietta Lacks` Legacy: A Conversation with the Lacks Family

Henrietta Lacks’ Legacy: A Conversation with the Lacks Family
Audience Questions & Responses
RESEARCH ETHICS QUESTIONS
Note: the responses below have been compiled by the CYW Research Team to the best
of their knowledge
1. How can we encourage black people in our communities to participate in
research/clinical trials when our own health care systems data continues to report
our negative health care outcomes?
a. The issues that plague under-resourced communities can be overwhelming.
Negative health outcomes and especially health disparities between African
American and whites are unfortunately a reality, but these concerns are also
reasons to take action. African American communities and other minority
groups MUST have a bigger role in taking control of our future and our health
instead of leaving it up to institutions and sitting by when disparities widen. To
make meaningful differences in health outcomes for our communities, we
MUST participate and be at the table. When we participate in research, we
learn about our unique health needs as minorities, which can help us move
toward specific, effective solutions. Researchers must hear from us—they
need to understand what our priorities are and know that we want to work to
reduce existing health disparities.
Because research takes times, we may not personally and immediately benefit
from the research we partake in today. However, our future children,
grandchildren and great grandchildren are relying on our involvement so that
they can benefit from future health innovations and policies.
2. Do you think that American Medical Research is really interested in finding
breakthroughs that will advance black longevity? Given how America views Blacks
today?
a. Yes! The future of the nation depends on having individuals that are healthy
and contributing to society in a positive way. Furthermore, researchers have
an obligation to work towards advancing the longevity of all Americans. By
2060, 57% of persons in the US will be of minority race/ethnicity; the
population of African Americans is likely to increase from 41 million to 62
million between now until then. Public health is dedicated to promoting and
improving the health of the public; our public is going to diversify greatly and
public health officials, including doctors, researchers, policymakers, and
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community health workers, must serve our multiethnic population through the
best of practices. First, however, we need to carry out research to determine
what these best practices are.
Finally, American culture is changing as it always has (albeit slowly). Today,
the younger generation has more positive attitudes about race than
generations in previous decades. With time, we will see a lot of changes,
culturally and in the medical system, but we must help lay the foundation now.
https://www.census.gov/newsroom/releases/img/racehispanic_graph.jpg
http://www.people-press.org/2011/11/03/section-1-how-generations-havechanged/
3. What has been the response if any from the medical community since release of
book? Now that there’s a face with the name Hela.
a. Every institution is going to respond differently. For example, in 2010, UCSF
and San Francisco General Hospital hosted a speaking event with the author
Rebecca Skloot before the book became famous around the country.
Johns Hopkins, where Henrietta’s cells were cultured, released a news report
following the release of Skloot’s book:
http://www.hopkinsmedicine.org/news/media/releases/A_Statement_From_J
ohns_Hopkins_Medicine_About_HeLa_Cells_and_Their_Use ). Since then,
Johns Hopkins has responded with the Annual Henrietta Lacks Memorial
Lecture, the Henrietta Lacks Memorial Award and the Henrietta Lacks Dunbar
Health Sciences Scholarship.
Finally, in classrooms throughout the nation, high school and college students
are required to read the book as part of their education in the health sciences;
over 150 schools have adopted “The Immortal Life of Henrietta Lacks” as a
required reading.
4. Are institutions obligated to inform you of research done on your cells once collected
and given to their pathology?
a. Researchers will initially explain why they are interested in conducting
research on your cells but are not required to keep you informed of what
happens with your information and cells after data collection. However, you
have a right to ask the researcher any questions you may have; you also have
a right to contact the IRB (this organization oversees the research study). The
IRB and the researcher’s phone numbers are listed on the consent form as
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well as your rights as a study participant. CYW would like to hold future
community events to break down and explain consent forms so that
community members feel comfortable reading these forms and asking
questions for which they deserve to know the answers to. Furthermore, CYW
would like feedback from community members when developing consent
forms for future research projects.
5. How do we protect our cells from exploitation?
a. The laws for using tissues and cells for research are complicated and little has
changed since Rebecca Skloot published her book. If a researcher collects
cells/tissues for research and the participant’s name is attached, researchers
must obtain informed consent from participants. However if the cells/tissue
are collected in a clinic for a routine test or procedure and if there are leftover
cells/tissues, given that the patient’s name is removed, those cells/tissues can
be used for research without consent or permission from the patient.
Rebecca Skloot wrote an article about the use of cells/tissues and when
patient consent or permission is and is not required:
http://www.nytimes.com/2006/04/16/magazine/16tissue.html?_r=0
6. How can we spread awareness, boost trust, and improve understanding of research
in the life sciences?
a. Similar to what Geri and Kim from the Lacks family stated, communication
and collaboration between communities and research institutions is very
important. Here are some recommendations
i. A lot of community partnerships between community organizations
and research institutions already exist. Reach out to these institutions
and see what they are doing. CYW for example, has the Community
Research Board which meets every month. This group provides
guidance on CYW’s research activities and will receive training on
research. CRB members will eventually carry out their own study using
a Community Based Participatory Research (CBPR) model. Please
contact Sukh Purewal, [email protected] for more
information.
ii. Continue to attend events like this one; CYW will be holding more
community research events in the future to promote understanding of
research. Please read our newsletter and visit our website,
www.centerforyouthwellness.org/blog to stay connected and to learn
about future events. You may also contact Lydia Vincent-White,
[email protected] for information.
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iii. Be sure to ask questions and hold researchers accountable when you
are curious or uncomfortable about something in a research study
7. How can people fight for their right to control what happens to their body?
a. You should always be informed of what happens to you and your body during
a research study and remember that participating in a research study is
voluntary. You do not have to participate and if you do decide to participate,
ask a lot of questions, stay tuned to your body’s responses after a study, and
follow up with research staff. If you are participating in a trial that requires you
to take medication, vitamins, or asks you to engage in activities like physical
exercise, immediately report any and all physical and mental health symptoms
that arise to researchers. Unfortunately, we have less control over what
happens to the cells/tissues that are studied outside of our bodies. If you
donated biological samples (i.e. tissue, saliva, blood, urine) for research, you
should ask the researcher questions about the study and what the samples
will be used for.
8. How much of our rights to the benefit of research must we surrender?
a. Research is voluntary and you should never feel forced to participate in a
study. Furthermore, there are different degrees of participation. Not all
research studies require providing biological samples. In fact, many studies
use surveys and focus groups which ask questions about your health and your
experiences. Some studies take as little as 5-10 minutes, some take several
hours and some also require a follow-up.
We understand that the historical examples of unethical research are
unsettling. However, similar to the process of voting, we cannot foster cultural
change without being active participants. We must put effort into getting to
know research practices and health issues, similar to getting to know election
candidates and political issues.
Change is needed in our healthcare system and it takes time for research to
influence and guide new healthcare practices and policies. Although these
necessary changes may not come today or tomorrow, they can and will
happen for our future generations including children, grandchildren and great
grandchildren who will benefit from our hard work. Research is about investing
in the future, only we have the ability to invest and we must do so now.
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GENERAL HEALTH/SUPPORT QUESTIONS
Note: the responses below have been compiled by the CYW Research Team to the best
of their knowledge
1. What advice would you give us as women who may be facing some treatment for
cancer?
a. If you are facing cancer treatment, we understand that this is a challenging
time for you. However, we hope that you are feeling supported – through
family, community and your healthcare provider. Please check with your
doctor and nurses about your treatment progress, as well as support groups
and resources offered through the hospital. Church and community
organizations are also great settings to connect with others who share your
journey.
GENERAL SCIENCE QUESTIONS
Note: the responses below have been compiled by the CYW Research Team to the best
of their knowledge
1. Why were Henrietta’s cells picked to duplicate?
a. Henrietta’s cells were the first human cells to live and multiply outside of a
human body (in the laboratory) continuously. Other human cells died very
quickly in the laboratory.
2. Are Hela cells the only immortal cell currently known to us?
a. Today, there are many human cell lines that researchers use
3. Are they still experimenting on people’s genes?
a. Yes, genetic studies are still carried out in the scientific/health field to learn
more about diseases and medications. Dr. Esteban Burchard’s staff at UCSF
has studied the relationship between genes and asthma. They found that
certain asthma medications do not work as well for African Americans than for
other groups. This example shows why genetic studies are important so that
researchers can develop a medication that is effective.
4. What is the name of the medicine developed from the HeLa cells that is now saving
people?
a. There were several medicines developed from the HeLa cells. The HeLa cells
have been used in thousands of research studies and have supported the
development of treatment for cancer, diabetes, syphilis, herpes, influenza, and
Parkinson’s disease, to name a few.
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QUESTIONS FOR THE LACKS FAMILY
Note: The answers to the questions below have been pulled from varied sources that are
referenced when applicable. An attempt was made to get the more personal questions
answered by the family, but the response from the Lyceum agency was, “there are
always more questions than time; we can’t set the precedent of having the family answer
questions after they have left the venue”:
1. Does your family get any portion of the billions of dollars that have been made from
pharmaceutical companies by Henrietta Lacks cells?
a. “Even though Henrietta’s cells launched a multimillion-dollar industry that
sells human biological materials, the family never saw any of the profits…”
b. http://www.lacksfamily.net/index.php
2. Is there any information shared with your family about past, current and future
medical advances of her cells?
a. The journey Deborah Lacks [Henrietta’s daughter] took with Rebecca Skloot
- the author of The Immortal Life of Henrietta Lacks uncovered information
about what had happened with Henrietta’s cells in the past.
b. “…Without fail audiences greet Henrietta’s family with cheers and standing
ovations. They thank Henrietta’s family for her contributions to science and
share stories of how they personally benefited from her cells. They say
things like, “I’m alive today because of a cancer drug Henrietta’s cells
helped develop.” Scientists often stand up saying, “Here’s what I did with
your mother’s cells, and thank you, I’m sorry that this has been hard for you
and that no one told you what was going on.”
c. http://rebeccaskloot.com/faq/#questions-lacks
3. Has telling your grandmothers story played a part in healing your family’s trauma
around how her cells were used without the family’s permission? Unanswered (see
note above)
4. Aside from an apology, has John Hopkins offered any compensation to the family?
a. “Various spokespeople for Johns Hopkins, including at least one past
university president, have issued statements to me and other journalists
over the years saying that Hopkins never made a cent off HeLa cells, that
George Gey gave them all away for free”. (Skloot, Rebecca. (2010) The
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Immortal Life of Henrietta Lacks, New York, NY: Crown Publishing Group.
Page 194)
b. “A group at Hopkins has also worked closely with the Lacks family and the
Henrietta Lacks Foundation to ensure that members of Henrietta’s family
get their healthcare needs taken care of.”
http://rebeccaskloot.com/faq/#questions-lacks
5. I read that your family decided, after researchers sequenced Henrietta’s genome, on
limited access to the genomic information.
a. An agreement by the family and the National Institutes of Health (NIH) took
place in 2013 which promises, Lack's genome data will be accessible only to
those who apply for and are granted permission. And two representatives of
the Lacks family will serve on the NIH group responsible for reviewing
biomedical researchers’ applications for controlled access to HeLa cells.
Additionally, any researcher who uses that data will be asked to include an
acknowledgement to the Lacks family in their publications.
http://www.nbcnews.com/health/health-news/nih-finally-makes-goodhenrietta-lacks-family-its-about-time-f6C10867941
6. Do you feel like more could have been done to protect this information? Do you have
other hopes for scientists working with Hela cells in general? Unanswered (see note
above)
7. When did you find out they were experimenting on your grandmother genes?
a. Henrietta’s family did not learn that the cells existed until the ‘70’s, (more than
twenty years after her death)…
http://www.lyceumagency.com/the+lacks+family.aspx
8. Are they still experimenting on people genes?
a. Yes, genetic studies are still carried out in the scientific/health field to learn
more about diseases and medications. Dr. Esteban Burchard’s staff at UCSF
has studied the relationship between genes and asthma. They found that
certain asthma medications do not work as well for African Americans than for
other groups. This example shows why genetic studies are important so that
researchers can develop a medication that is effective.
9. And how can I protect myself if it happens to me?
a. Every individual’s situation will be different, but here is an example of one
person pulling in others in a proactive way:
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b. “Several patient groups have created their own tissue banks so they can
control the use of their tissues and the patenting of discoveries related to
them, and one woman became a patent holder on the disease gene discovered
in her children’s tissues, which lets her determine what research is done on it
and how it’s licensed.” (Skloot, Rebecca. (2010) The Immortal Life of Henrietta
Lacks, New York, NY: Crown Publishing Group. Page 323)
10. What’s the name of your grandmother’s medicine that’s healing?
a. “Her name was Henrietta Lacks, but scientists know her as HeLa. (Skloot,
Rebecca. (2010) The Immortal Life of Henrietta Lacks, New York, NY: Crown
Publishing Group. Book jacket)
b. They [HeLa] became the first immortal human cell line ever grown in culture
and one of the most important tools in medicine: Research on HeLa was vital
to the development of the polio vaccine, as well as drugs for treating herpes,
leukemia, influenza, hemophilia, and Parkinson's disease; it helped uncover the
secrets of cancer and the effects of the atom bomb, and led to important
advances like cloning, in vitro fertilization, and gene mapping. Since 2001
alone, five Nobel Prizes have been awarded for research involving HeLa cells.
http://www.oprah.com/world/Excerpt-From-The-Immortal-Life-of-HenriettaLacks_1
11. Given the pain of how researchers violated the trust of your family, what made you
believe that research could benefit communities of color? When or how did you decide
this?
a. “The Lacks family has gotten to a point where they try to separate what
happened with Henrietta’s cells from what happened to them. Henrietta’s cells
have been this incredible benefit to science and her family really sees that as a
miracle, and they are now able to say, “We think that they’re incredible, and
they’ve done wonderful things and that makes us happy. We’re very glad that
her cells are out there and being used in the way that they are. We wish it
didn’t happen the way that it did. We wish they’d told us, we wish they’d asked,
because we would have said yes. We wish they’d explained things to us when
we asked, we wish they hadn’t released her medical records.” There were a lot
of things the Lacks family were unhappy about in terms of the way that they
were treated, but the way they think about the cells definitely does not reflect a
feeling that Henrietta was being enslaved. It’s more a feeling of her being an
angel. In life Henrietta was this woman who lived to take care of everybody,
and so to the family it makes perfect sense that she’s doing that in death, too.
They don’t see the cells themselves as a dark or negative thing.
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b. That said, they are still quite upset about the issue of money and the fact that
others have profited from the cells and her family hasn’t, which is still the case
today.”
c. http://rebeccaskloot.com/faq/#questions-lacks
12. What are your final words to the children in the audience? Unanswered
13. What do you guys plan to do about the cells being taken? Did you guys want to
protest?
a. “Our family is focusing on positive aspects of Henrietta’s scientific contribution
to the world. The Lacks family has moved from being victims, to victory of a
proud family heritage.” http://www.lacksfamily.net/index.php
14. What is your book really about?
a. The book that brought Henrietta Lacks and the Lacks family to prominence
was not written by the family; it was written by Rebecca Skoot and is titled The
Immortal Life of Henrietta Lacks.
b. The Immortal Life of Henrietta Lacks tells a riveting story of the collision
between ethics, race, and medicine; of scientific discovery and faith healing;
and of a daughter consumed with questions about the mother she never knew.
It’s a story inextricably connected to the dark history of experimentation on
African Americans, the birth of bioethics, and the legal battles over whether we
control the stuff we’re made of. http://rebeccaskloot.com/the-immortal-life/
c. Lawrence Lacks, a son of Henrietta Lacks has authored an
e-book titled HeLa Family Stories: Lawrence and Bobbette
by Lawrence Lacks, Bobbette Lacks and A.D. Lively. The
book, currently available for purchase on Amazon.com, is a
49-page electronic book. While Skloot’s book told much of
the story of Henrietta Lacks and her “immortal” cells,
Lawrence’s book aims to share what Lacks was really like,
as a loving mother and a real-life person.
d. http://www.dundalkeagle.com/component/content/article/26-frontpage/46234-telling-the-story-in-their-own-words
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