Thursday, May 31, 2012
More on Henrietta Lacks and compensation for medical test subjects
A few weeks ago, my wife and I attended "A Conversation With David 'Sonny' Lacks" at the California Center for the Arts in Escondido. The event was a sellout with 900 attendees. As it turns out, most of the colleges and universities in San Diego County designated "The Immortal Life of Henrietta Lacks" as the book discussed by students and faculty this past academic year. The conversation was sponsored by California State University, San Marcos. As an added bonus, Mr. Lacks' daughter appeared with him on the podium. I had previously attended a similar lecture with the author, Rebecca Skloot, at the University of Calirfornia-San Diego.
The story of Henrietta Lacks can be viewed from several vantage points. As a medical oncologist, and Chairman of the Investigational Review Committee, as well as Medical Director of the Research Institute at Palomar-Pomerado Health, ethics in medical research certainly occupies a position of paramount importance to me. In fact, the book is being discussed locally primarily from this perspective.
Ms. Skloot points out that obtaining "Informed Consent" from patients to do research on their tissue was not required, nor was it considered, in 1951 when Mrs. Lacks' biopsy was obtained for research purposes. Mr. Lacks stated he did not feel the family should receive financial compensation for using her tissue for research purposes. But, Henrietta and the family should have been told that her cells were going to be used for research purposes, what the research involved, and knowledge of the results--in other words, informed consent as we now require in all patients undergoing clinical trials.
On the other hand, he did feel that the family should receive financial remuneration from the companies that commercialized his mother's cells by selling them to labs around the world. This proposal seems fair. To date, no financial restitution has occurred.
Despite all this, Mr. Lacks maintains an air of dignity that engenders respect. Throughout the evening, there was no expression of anger or hostility; no complaining. When asked if he thought that racial discrimination played a role in how they were treated, Mr. Lacks said no, people of all races were treated the same at that time. Sonny said that although no one from Johns Hopkins has ever formally apologized, they have honored his mother in other ways.
Sonny Lacks was 3 years old when his mother died. So, he has no direct recollection of her. In fact, the picture on the front of the book is the only picture of Henrietta in existence. All that he and his daughter know about her they learned from his older siblings and Ms. Skloot's research for the book. When Henrietta was treated, Johns Hopkins was the only hospital in the state of Maryland that treated the uninsured.
Fast forward to the present and this sore is still festering in our country. Mr. Lacks stated that he recently required stents placed in his coronary arteries on an urgent basis and he, like all the members of his family, is uninsured. This brought an audible gasp from the audience. He said he had $100,000 in unpaid bills, and he opined that health care should be a right as it is in other countries, not a privilege for only those who can afford it. This elicited a vigorous round of applause from the audience. I would add that the number of people in the U.S. who can afford access to healthcare is dwindling also. [Author's Note: For specific discussion on the impact in the black community, see: "Blacks See Largest Decline in Health Insurance Coverage."]
The closest we have to universal healthcare provided by government is Medicare and Medicaid (MediCal in California), see: "Medicare: The Basics." I recently crunched the numbers in my own situation at age 70 to decide whether or not to convert from my medical group's health plan (since I'm still working to full Medicare coverage. Plan A is free and mandatory at age 65. But I needed Plan B, a and Medicare Part D for prescription drugs.
Part B involves an annual fee of $140 plus monthly premiums of $99 plus something called "Modified Adjusted Gross Income" (MAGI). The IRS now sends Medicare a report of my income and a graduated monthly charge is added to my premium. The monthly total amounted to $259.70. Added to that is the cost of the Supplement and Medicare Part D. Then the out of pocket expenses including cost of drugs in the donut hole and now you're talking "real money." Of course, you can opt for a Medicare HMO but choices are limited. So for effect, I will quote myself (drum roll please!): My conclusion was that being insured does not equate to being covered, and I needed to be a CPA to figure this out. So, I stayed with my group health plan.
The most poignant moment of the evening occurred when Henrietta's granddaughter was asked how she felt her grandmother should be remembered. Her answer: "The gift that keeps on giving."
Not a dry eye in the room.
This post by Richard Just, MD, ACP Member, originally appeared at JustOncology.com, a joint publication of Richard Just, MD, aka @chemosabe1 on Twitter and Gregg Masters, MPH, aka @2healthguru on Twitter. Dr. Just has 36 years in clinical practice of hematology and medical oncology.
Labels: cancer, ethics, guest post, informed consent, JustOncology, research, Richard Just
posted by Richard Just, MD at
9:00 AM
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Members of the American College of Physicians contribute posts from their own sites to ACP Internistand ACP Hospitalist. Contributors include:
Albert Fuchs,
MD
Albert Fuchs, MD, FACP, graduated from the
University of California, Los Angeles School of Medicine, where he
also did his internal medicine training. Certified by the American
Board of Internal Medicine, Dr. Fuchs spent three years as a
full-time faculty member at UCLA School of Medicine before opening
his private practice in Beverly Hills in 2000.
And Thus, It Begins
Amanda Xi, ACP Medical
Student Member, is a first-year medical student at the OUWB School
of Medicine, charter class of 2015, in Rochester, Mich., from which
she which chronicles her journey through medical training from day
1 of medical school.
Zackary Berger
Zackary Berger, MD, ACP Member, is a primary care doctor and
general internist in the Division of General Internal Medicine at
Johns Hopkins. His research interests include doctor-patient
communication, bioethics, and systematic reviews.
Controversies in Hospital
Infection Prevention
Run by three ACP
Fellows, this blog ponders vexing issues in infection prevention
and control, inside and outside the hospital. Daniel J Diekema, MD,
FACP, practices infectious diseases, clinical microbiology, and
hospital epidemiology in Iowa City, Iowa, splitting time between
seeing patients with infectious diseases, diagnosing infections in
the microbiology laboratory, and trying to prevent infections in
the hospital. Michael B. Edmond, MD, FACP, is a hospital
epidemiologist in Richmond, Va., with a focus on understanding why
infections occur in the hospital and ways to prevent these
infections, and sees patients in the inpatient and outpatient
settings. Eli N. Perencevich, MD, ACP Member, is an infectious
disease physician and epidemiologist in Iowa City, Iowa, who
studies methods to halt the spread of resistant bacteria in our
hospitals (including novel ways to get everyone to wash their
hands).
db's Medical Rants
Robert M. Centor, MD, FACP, contributes short essays contemplating
medicine and the health care system.
DrDialogue
Juliet K. Mavromatis, MD, FACP, provides a conversation about
health topics for patients and health professionals.
Dr. Mintz' Blog
Matthew Mintz, MD, FACP, has practiced internal medicine for more
than a decade and is an Associate Professor of Medicine at an
academic medical center on the East Coast. His time is split
between teaching medical students and residents, and caring for
patients.
Everything
Health
Toni Brayer, MD, FACP, blogs about the rapid changes in science,
medicine, health and healing in the 21st century.
FutureDocs
Vineet Arora, MD, FACP, is Associate Program Director for the
Internal Medicine Residency and Assistant Dean of Scholarship &
Discovery at the Pritzker School of Medicine for the University of
Chicago. Her education and research focus is on resident duty
hours, patient handoffs, medical professionalism, and quality of
hospital care. She is also an academic hospitalist.
Glass Hospital
John H. Schumann, MD, FACP, provides transparency on the workings
of medical practice and the complexities of hospital care,
illuminates the emotional and cognitive aspects of caregiving and
decision-making from the perspective of an active primary care
physician, and offers behind-the-scenes portraits of hospital
sanctums and the people who inhabit them.
Gut Check
Ryan Madanick, MD, ACP Member, is a gastroenterologist at the
University of North Carolina School of Medicine, and the Program
Director for the GI & Hepatology Fellowship Program. He
specializes in diseases of the esophagus, with a strong interest in
the diagnosis and treatment of patients who have
difficult-to-manage esophageal problems such as refractory GERD,
heartburn, and chest pain.
I'm dok
Mike Aref, MD, PhD, FACP, is an academic hospitalist with an
interest in basic and clinical science and education, with
interests in noninvasive monitoring and diagnostic testing using
novel bedside imaging modalities, diagnostic reasoning, medical
informatics, new medical education modalities, pre-code/code
management, palliative care, patient-physician communication,
quality improvement, and quantitative biomedical imaging.
Informatics
Professor
William Hersh, MD, FACP, Professor and Chair, Department of Medical
Informatics & Clinical Epidemiology, Oregon Health &
Science University, posts his thoughts on various topics related to
biomedical and health informatics.
David Katz, MD
David L. Katz, MD, MPH, FACP, is an internationally renowned
authority on nutrition, weight management, and the prevention of
chronic disease, and an internationally recognized leader in
integrative medicine and patient-centered care.
Just Oncology
Richard Just, MD, ACP Member, has 36 years in clinical practice of
hematology and medical oncology. His blog is a joint publication
with Gregg Masters, MPH.
KevinMD
Kevin Pho, MD, ACP Member, offers one of the Web's definitive sites
for influential health commentary.
MD
Whistleblower
Michael Kirsch, MD, FACP, addresses the joys and challenges of
medical practice, including controversies in the doctor-patient
relationship, medical ethics and measuring medical quality. When
he's not writing, he's performing colonoscopies.
Medical Lessons
Elaine Schattner, MD, FACP, shares her ideas on education, ethics
in medicine, health care news and culture. Her views on medicine
are informed by her past experiences in caring for patients, as a
researcher in cancer immunology, and as a patient who's had breast
cancer.
Mired in MedEd
Alexander M.
Djuricich, MD, FACP, is the Associate Dean for Continuing Medical
Education (CME), and a Program Director in Medicine-Pediatrics at
the Indiana University School of Medicine in Indianapolis, where he
blogs about medical education.
More Musings
Rob Lamberts, MD, ACP Member, a med-peds and general practice
internist, returns with "volume 2" of his personal musings about
medicine, life, armadillos and Sasquatch at More Musings (of a
Distractible Kind).
Prescriptions
David M. Sack, MD, FACP, practices general gastroenterology at a
small community hospital in Connecticut. His blog is a series of
musings on medicine, medical care, the health care system and
medical ethics, in no particular order.
Reflections of a Grady
Doctor
Kimberly Manning, MD, FACP, reflects on the personal side of being
a doctor in a community hospital in Atlanta.
The Blog of Paul Sufka
Paul Sufka,
MD, ACP Member, is a board certified rheumatologist in St. Paul,
Minn. He was a chief resident in internal medicine with the
University of Minnesota and then completed his fellowship training
in rheumatology in June 2011 at the University of Minnesota
Department of Rheumatology. His interests include the use of
technology in medicine.
Technology in (Medical)
Education
Neil Mehta, MBBS, MS, FACP, is interested in use of technology in
education, social media and networking, practice management and
evidence-based medicine tools, personal information and knowledge
management.
Peter A. Lipson,
MD
Peter A. Lipson, MD, ACP Member, is a practicing internist and
teaching physician in Southeast Michigan. The blog, which has been
around in various forms since 2007, offers musings on the
intersection of science, medicine, and culture.
Why is American Health Care So Expensive?
Janice
Boughton, MD, FACP, practiced internal medicine for 20 years before
adopting a career in hospital and primary care medicine as a locum
tenens physician. She lives in Idaho when not traveling.
World's Best Site
Daniel Ginsberg, MD,
FACP, is an internal medicine physician who has avidly applied
computers to medicine since 1986, when he first wrote medically
oriented computer programs. He is in practice in Tacoma,
Washington.
Other blogs of note:
American Journal of
Medicine
Also known as the Green Journal, the American Journal of Medicine
publishes original clinical articles of interest to physicians in
internal medicine and its subspecialities, both in academia and
community-based practice.
Clinical
Correlations
A collaborative medical blog started by Neil Shapiro, MD, ACP
Member, associate program director at New York University Medical
Center's internal medicine residency program. Faculty, residents
and students contribute case studies, mystery quizzes, news,
commentary and more.
Interact MD
Michael Benjamin, MD, ACP member, doesn't accept industry money so
he can create an independent, clinician-reviewed space on the
Internet for physicians to report and comment on the medical news
of the day.
PLoS Blog
The Public Library of Science's open access materials include a
blog.
White Coat
Rants
One of the most popular anonymous blogs written by an emergency
room physician.
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