Conversations with a skeptic: Friends and family who are COVID vaccine hesitant

Illustration by Jonathon Rosen

When people are reluctant to accept science, or recommendations based on science, my curiosity comes alive. When that person is a twenty years-long friend, I’m even more curious. Matt* is my late husband’s best friend and we talk a lot about topics typically off the table: religion, politics and covid vaccination.

It turns out, seven months into vaccine availability for his risk group, Matt is still not vaccinated. I was vaccinated at my first opportunity. Our chats about covid vaccines have ramped up as his deadline of workplace mandated vaccination looms.

Since I knew these would be ongoing conversations and not just a one-time thing, I wanted to think more about Matt’s background to see if there might be some clues to his perspective. If I were to profile Matt, I’d note that he was raised as an evangelical Christian but no longer practices; graduated college; is a politically moderate gay man; he doesn’t sleep well so has time on his hands; he consumes podcasts, alternative channels and mainstream news more than most people I know; he fact checks sources when he has time; he’s considered going into local politics to be a changemaker; he’s held numerous jobs including realtor, ELL instructor in Taiwan, maintenance supervisor, painter and beer guy at the stadiums.

At first I was just overwhelmed with how much Matt was reading and sharing with me regarding his vaccine hesitancy. Mostly I just listened to him and then started watching and reading the information he referenced. One afternoon at Cowen Park, after our 5^th or 6^th impromptu talk on covid vaccines, I had this “Dolby sound” moment where things just coalesced.

Matt doesn’t trust the pharmaceutical industry. But he never said this directly.

Matt thinks his immune system is capable and doesn’t need priming by a vaccine. But he never said this directly.

According to Dr. Amitabha “Guppy” Gupta, one of Fred Hutch’s philanthropy scientific content analysts, people form mental anchors, or deeply-tethered ways of thinking, about things. In Matt’s case, his main anchor is distrust of the pharmaceutical industry. One of his secondary anchors is the belief that his body’s immune response outperforms influences from pharmaceuticals.

Once I recognized Matt’s anchors (after hours of listening and hours of watching his YouTube suggestions), I realized that all along he sought and presented tons of data to back up his deeply-tethered beliefs. The way Matt seeks data is a kind of confirmation bias, or “myside bias.” Probably unknowingly, Matt seeks information that supports his anchors. Most of us do! To be fair he does sometimes receive information counter to these anchors, especially when I openly disagree with conclusions/experts/data that we’ve discussed.

So I summarized back to Matt: “Tell me if I’m wrong, but it sounds to me like you don’t trust the pharmaceutical companies and you’re worried that the vaccine will mess with your immune system.”

Matt actually looked peaceful. I think just being understood and feeling respected made a big difference for him. Don’t get me wrong. Matt didn’t run out and get the jab because of our talks. But our friendship grew deeper and I feel we can talk about this anytime with mutual respect.

During NWABR’s recent Communication Workshop I was asked how to overcome negative feelings towards people with whom we strongly disagree. Remember that not everyone is a good candidate for a feisty conversation. Discern when to engage and when to let things go. If you let it go, release the conversation with uber-politeness. For example, “I know you’ve put a lot of thought into this. I admire your passion.” If you decide to engage, it’s important to remember that in these dichotomous situations your best bet is to surprise your person with a willingness to compassionately listen to their perspective; this is not about winning an argument. Secondly, see your person as a human being. As someone’s child. When I do this I see my person with love and respect along with a desire to care and lift them up. Remember that their view on covid vaccines isn’t what defines them or their character.

Walking with someone as you disagree with them is not easy, but from personal experience I highly recommend the journey. Best wishes on yours.

*I’ve shared these stories with Matt’s permission.

Jen Wroblewski, MPH, is Public Engagement Manager at Northwest Association for Biomedical Research (NWABR). She co-founded Seattle’s Science on Tap and is a public science communication advocate. Jen welcomes your thoughts and questions on this article: engagement@nwabr.org.

Celebrating a journey of family, hope, scientists and philanthropy to treat myotubular myopathy in Phase 1 clinical trials, Part 1

If you are a parent you already know the guts, fortitude, desire and village it takes to raise a child from milestone to milestone to adulthood.  Imagine your child is born with a fatal genetic disease affecting the function of all his skeletal muscles.  Meet Alison and Paul Frase, their daughter Isabella, and finally their son Joshua who was born with myotubular myopathy.  If you remember anything about their story, I want you to remember the power of passionate parents working with brilliant, dedicated scientists who tenaciously act and hope for a cure through biomedical research.

The genetic villain in the story is the MTM1 gene, where mutations cause total loss of function in the myotubularin gene.  This gene normally makes an enzyme, myotubularin, which is thought to create and maintain muscle cells.  Kind of important. So when the gene cannot make this enzyme, people (and animals like dogs) experience muscular “floppiness,” breathing issues, feeding issues and scoliosis to name a few.

If you are a scientist, like Dr. Martin Childers, you also know the guts, fortitude, desire and village it takes to conduct research…especially research you hope will treat devastating genetic diseases like the one that affected Joshua.

The Frases, Dr. Childers and other folks have partnered to do something about myotubular myopathy in animals and people.  NWABR is honoring their work at the Speak Up for Research Gala this year.  Want to know more?  Stay tuned for the May newsletter and register for the Gala on May 24^th.

The War on Drug Prices

Most Americans ask the question, is the price I pay for prescription medications FAIR? In other words, what is the true cost of developing, making and selling a medicine, AND how much profit seems reasonable? This is what we tackled last week during our Community Conversation with experts from the U of Washington’s International Society for Pharmacoeconomics and Outcomes Research (ISPOR).

KEY FACTS THAT INFORMED OUR DISCUSSION
Tufts estimates that it costs $2.6 billion to develop an FDA approved drug, a number that increases 9% per year.  People in the US pay more for drugs than people in other countries for a few reasons: 1) we use more medications because we have better access to new ones, 2) we have a higher burden of chronic disease like diabetes and obesity, and 3)  in the US, the government protects drug manufacturing monopolies and limits price negotiations while other countries have more price regulation.

Another reason people in the US (and in Canada and Europe) pay more for medications is simply because, on the whole, we can afford to. Picture a world map, and picture all the people who live on Earth.  At 326 million, the US population is 4.4% of the world’s 7.5 billion people, but the US accounts for 50% of all medication sales in the world. Mind blown.

We are looking for VALUE in our medications.  We want medications that are novel and offer leaps of improved quality of life.  We are willing to pay more for medications that achieve this high bar, but there is a point for every person where price will exceed our ability to purchase a medication.

Finally, we learned about the trade-off between innovation and access.  Monopoly protection funds innovation. In turn, industry creates more new drugs in the long run that cost more money in the short run and poorer access. “But if new medicines aren’t invented, then no one can access them in the long term.” (ISPOR)  How can the market incentivize innovation if not through the almighty dollar?

DISCUSSION THEMES
Many in the room were for the first time faced with the reality that the US foots HALF the bill of medications in the world.  I don’t think anyone, besides the facilitators, was prepared for this data.  As the discussion dug deeper, we realized that our drug costs fund innovation of new medications and devices.  Despite the relationship between US drug prices and world drug innovation, many participants still did not think it FAIR that people in the US pay more than those in other countries.

Some held high the banner of altruism and seemed happy having the US play this role.  Others felt perhaps that even within the US that medication prices should be on a sliding scale based on what a household could afford.  Some shared personal stories about themselves or people they know who have had to choose between paying for their medications and paying other bills.

Yet others remained firm that prices could drop while maintaining innovation if pharmaceutical companies could lower their profits to reasonable margins.  Some attendees implied that companies could reduce their expenses by accelerating the clinical research process, a point that was strongly opposed by a former industry employee.  Pharmaceutical companies have no interest in accelerating clinical research in this manner because it would cause less confidence in drug safety.

As we were wrapping up our Conversation, we faced the question of whether or not the way we finance medications is sustainable.  Our vocal attendees had faith in the free market to correct anything that was broken.  Others remarked that the balance of medications on and off patent would also help with price competition once medications go off patent.

Our ISPOR facilitators emphasized that drug pricing is a complex ecosystem.  They recommended that consumers, scientists, policy-makers and health care providers and administrators continue to learn and share their perspectives, in venues such as Community Conversations, as much as possible in order to find a stable and sustainable relationship between medication access and innovation.

To read some excellent resources on the topic, visit the Community Conversation archive and scroll until you find the “war on drug prices” topic.

~JenWroblewski

Speak Up For Research Education Fund

How did science hook you?

Strawberry DNA extraction

Did you have a teacher whose lab was your favorite place to hang out in high school? Were you a biology graduate student who fought for better treatment of animals and found a calling in animal care or health ethics? Did you travel and see suffering that would be diminished with the right vaccination?

I got hooked as a member of the St John Ambulance Brigade in New Zealand where as a teenager I was able to volunteer in ambulances, hospitals and rest homes and saw evolving treatments driven by research.

I’m both excited about science and concerned about its future. I see a growing distrust in biomedical research, waning science literacy and an almost perverse celebration of anti-science sentiments; this all of course at a time when new biomedical research breakthroughs are occurring on a daily basis. Here at NWABR, we see the possibilities of science and are excited by the opportunities for young people to get hooked into fascinating and important science fields—but we also see a gap in the science education for the general public that results in twisted logic, misinformation, hijacked conversations and bad policy decisions.

NWABR bridges that gap, combats that misinformation, and leads spirited and informative conversations about complex issues related to biomedical research.  And we need your help.

Today, I’m asking readers you to join our newest fundraising initiative: the Speak Up For Research Education Fund.  Over the last two years more that 1,400 people have joined NWABR at a series of events:

• Perhaps they volunteered for our popular Bio Expo that engaged close to 700 high school students;
• Or they attended a Community Conversation on the ethics of end of life care, or vaccinations, or direct to consumer genetic testing.
• Perhaps they are a professional dedicated to ethical protections for humans and animals in research and you attended one of our research conferences;
• Or they attended our Security Conference and joined colleagues from across the country who are committed to keeping scientists, their facilities and their work safe.

This campaign to create a Speak Up For Research Education Fund is about protecting the belief and trust in biomedical research and ensuring that this work can continue robustly into the future.

Join the Speak Up For Research Education Fund and make a donation today by visiting:  https://donatenow.networkforgood.org/nwabr?code=Speak%20Up%20For%20Research

Alternatively you can send a contribution to the Northwest Association for Biomedical Research, 2633 Eastlake Ave E., Suite 302, Seattle WA 98102.

All supporters will be thanked by name in our public materials, unless of course they request to make an anonymous contribution.  All contributions will also be acknowledged with a tax deduction receipt.

This is a vital time for science – with the support of the Speak Up For Research Education Fund we can continue and expand the work of engaging students, families and communities with science.  With the support of this fund then one student at a time, one family at a time, one community at a time we will build support for, and trust in, biomedical research.

Thank you for Speaking Up For Research.

Kind Regards

 

Ken Gordon – Executive Director

Northwest Association for Biomedical Research

(P) 206-957-3337 (C) 206-595-2450

 

 

Our Bioteh Future

Good morning all

In all of the election coverage over the last few days you may have missed this guest editorial in the Seattle Times from H. Stewart Parker.  Ms. Parker in this Op. Ed. charts the development of a number of key biotech firms and products here in the Northwest and talks about the diaspora of staff from Immunex the company that invented Enbrel, a breakthrough drug for the treatment of rheumatoid arthritis.

H. Stewart Parker, MBA

Biomedical research and biotechnology combine to provide 34,200 direct jobs in WA state and a total of 92,400 total jobs once you count all of the ancillary support people (like me).  In total this sector makes up $11.4 Billion of the state’s GDP and provides $7.1 Billion in personal income.

Unfortunately even though this sector makes up the 5th largest sector in the state, with life science organizations in 74 cities – it often feels like the sector flies under the radar screen with people seeing the major economic drivers in WA and the NW as being IT and aeronautics.  Ms. Parker’s Op. Ed. reminds us all of the contribution of the sector – both in terms of economics and also in terms of the life saving changes being brought to us on a daily basis.

Talking about life saving changes – I had the pleasure of attending a fund raising luncheon hosted by the Benaroya Research Institute this last Friday.  They have a very simple mission – they want to cure 80 plus autoimmune diseases, like Type 1 diabetes, Crohn’s Disease and MS.  In one word BRI’s work is – inspiring.  Their new brand of “BRIng it on” is both fun and a challenge to us all to do better.

Have a great day.

Ken Gordon

Executive Director

 

NWABR Urges Congress to Preserve Biomedical Research Funding

Sequestration could cost WA at least $70 million in grant funding

Now that the election is finally over, it’s easy to be distracted from the ongoing work of the current congress, and the looming threat that budget sequestration poses to the biomedical research industry. The Budget Control Act of 2011 requires that across-the-board cuts to be applied to a large portion of the federal budget on January 2, 2013, unless Congress reverses it. For domestic programs, around $39 billion in cuts would be applied to “discretionary” programs, which include the National Institutes of Health (NIH) and the National Science Foundation (NSF).  According to a United for Medical Research report, if NIH funding is cut by 7.8% as part of budget sequestration, the state of Washington will be hit especially hard, with a loss of 1,184 jobs and $72.2 million in grants supported by this funding. And that is just the beginning.

This week, members of Research!America, a nonprofit advocacy alliance, are headed to Capitol Hill to make the case that sequestration is harmful not just for biomedical research, but also for our economy. As part of their Save Research campaign, NWABR was proud to sign a letter urging congressional leaders to reject any deficit reduction proposals that would cut research funding or hinder incentives that support biomedical innovation.

The full letter is posted below. Please take a moment to reach out to your congressional delegation and ask them to preserve funding that will help combat disease and spur private sector innovation in the Northwest and beyond.

Dear Mr. Reid, Mr. McConnell, Mr. Boehner, and Ms. Pelosi:

As advocates for biomedical and health research, we are writing to urge you to refrain from deploying deficit reduction strategies, like sequestration, that would slow medical progress.

Our nation leads the world in biomedical and health research, a function of public sector support and private sector ingenuity. The National Institutes of Health (NIH) is unrivaled in spurring the basic discovery that lays the path for private sector innovation. Peer-reviewed NIH funding reaches all 50 states and congressional districts, spurring discovery at universities, hospitals, small businesses, and independent research institutes. In fact, NIH-supported research has:

• Supported nearly 500,000 jobs in 2011 in every state
• Generated $62 billion in economic activity in 2011
• Helped increase life expectancy from 47 years in 1900 to 78 years in 2009

But this is not just about NIH.  The National Science Foundation (NSF), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDC) and the Agency for Healthcare Research and Quality (AHRQ) all provide a positive return on investment to our nation, protecting American lives and promoting American prosperity.

• NSF’s grant portfolio is designed to identify and pursue the best scientific opportunities across the spectrum  of scientific disciplines, including biomedical research.
• FDA is a key conduit between medical discovery and medical progress, laying the path for safe and effective  medical products to reach the marketplace.
• CDC conducts and supports the public health research needed to contain disease outbreaks, promote wellness, and in other ways provide basic supports for a safe and healthy society; and
• AHRQ combats entrenched and insidious problems in our nation’s health care system – like preventable medical errors and needless administrative red tape — that take lives and inflate the cost of taxpayer funded health programs and private insurance alike.

Disinvesting from biomedical and health research – and the infrastructure and expertise needed to conduct it – would contravene the goal of deficit reduction. This research is one of the fundamental underpinnings of our economy, a reality well understood by other nations, which are ramping up their investment and building out their research infrastructure.  Research is a catalyst that creates businesses large and small, and generates jobs in research, manufacturing, distribution, exports, health care and a host of other sectors. Those businesses and jobs supply federal revenue needed to reduce the deficit.

In addition, research can help stem runaway federal healthcare spending, which is driving our deficit. While new treatments may require additional cost at the outset, research has shown the offsetting effects of reduced hospitalizations, fewer visits to providers, reduced home care, a reduction in the Social Security disability roles, and improved productivity.  As you well know, the cost of treating diseases like Alzheimer’s, Parkinson’s and other diseases are exploding. There is no high-impact alternative to research as a means of addressing this crisis.

When it comes to the fiscal health of our nation, biomedical and health research are part of the solution, not part of the problem.  Whether it is appropriations policy or entitlement and tax reform, we urge you to discard any proposal that cuts funding or mutes incentives for public- and private-sector supported medical innovation.   Compassion and pragmatism intersect in the decision to do so.

Thank you for your consideration.

NWABR Members Speak Up For Research

These two exceptional editorials from leaders in the Oregon Health and Science University community stand out for their thoughtful approach to advancing public understanding of biomedical research.

Please read, share, and comment:

Youth Ethics Summit 2011 :: Stem Cells :: Science and Ethics

On April 9, 2011 the Youth Ethics Summit brought together students from across the Puget Sound region to learn about topics related to ethics, medicine, and biomedical research that are of special relevance to young people.

Presented by NWABR and UW’s Institute for Stem Cell and Regenerative Medicine (ISCRM), this year’s summit focused on stem cells and featured tours, panels, and breakout discussions. The Summit provided an opportunity for students from different schools to meet and to participate in discussions and presentations about ethics in science issues.

Students Say

Students who experienced the Summit said:

• I learned just how much control we have/might have soon. Knowing where to draw the line isn’t easy, and it’s something we all need to discuss and understand in order to make wise choices as individuals and as a society.
• We were able to express our own ideas and see what other people thought about them … the discussions we had in our breakout groups were very thought-provoking … listening to different view points on things helped me learn a lot more about them.
• The tours gave me insight on what real life stem cell research would be like and how it would be to work in a lab in the future.
• It was absolutely amazing going into three different labs focusing on the application of stem cells, the stem cells themselves, and the use of robots in research. The groups were small, we had the opportunity to look at both embryonic and induced pluripotent stem cells through microscopes, and the researchers were all extremely informative.
• In the laboratories we toured, I saw myself in the scientist gown, handling the different machines.
• It was a wonderful learning experience that I would recommend anyone who is interested in bioethics … I loved the chance to meet similar-minded teens in the Seattle-area and talk about this fascinating topic.

Stem Cells 101

We began with a brief presentation of “Stem Cells 101” by Professor Tony Blau, MD, Director of the Institute for Stem Cell and Regenerative Medicine.

“If you took a drop of blood from my finger, put it on a glass slide, smeared it and stained it and looked at it under the microscope, you’d see different types of cells, including what?” Blau asked. Hands shot up, and Blau took three fast answers, one each from three students: white blood cells, red blood cells, platelets. “And they would look obviously different from each other,” Blau continued, describing what each looks like under a microscope, “but they all come from the same mother cell, a stem cell.”

Dr. Tony Blau, Professor of Medicine, Hematology, Adjunct Professor of Genome Sciences, and Co-Director, Institute for Stem Cell & Regenerative Medicine, University of Washington School of Medicine

In each of us, we might have a trillion cells in our blood, but we have about 10,000 blood-generating stem cells. “Where are these stem cells?” Blau asked and another student answered: in the bone marrow.

The professor next defined leukemia (cancer of the blood or bone marrow) and one life-saving treatment for it, dependent on stem cells and developed “next door” at the Fred Hutchinson Cancer Research Center. Stem cell transplantation with bone-marrow-derived stem cells was led by Dr. E. Donnall Thomas, whose work was recognized in 1990 with a Nobel Prize.

Dr. Blau explained the basics of hematopoietic stem cell transplantation, of regenerative medicine as studied at the ISCRM, and he introduced what we would see for ourselves, next — in tours of several research labs on campus at UW South Lake Union.

Tour One: Tony Blau Lab – cancer biology and stem cells

There are about 500 researchers at UW South Lake Union. Neighbors include the Seattle Cancer Care Alliance, Seattle Childrens’ Research Institute, Seattle Biomedical Research Institute, Novo Nordisk, PATH, Fred Hutchinson Cancer Research Center, et al.

Upstairs at his lab’s front door, Dr. Blau pointed out a few notable neighbors in biomedical research in Seattle’s South Lake Union neighborhood.

Researchers Tony Blau, Chris Miller, and Kyle Rattray of the Blau Lab

Researchers Kyle Rattray and Kathy Davidson at the Blau Lab

Tour Two: Mike Laflamme Lab – cardiovascular research

Professor Laflamme’s lab researches cardiac applications for human embryonic stem cells, including repair and regeneration of ventricular, atrial, and other cells from embryonic stem cells.

Professor Mike Laflamme, Pathology, Molecular and Cellular Biology, University of Washington

Researcher Jay Gantz, UW Bioengineering

Tour Three: Tim Martins, Co-Director of the Quellos High Throughput Screening Core – screening molecules for drug development

Dr. Tim Martins, Co-Director welcomes us to the Quellos High Throughput Screening Core, full of the robotics and automation which have vastly improved biomedical research with improved speeds for identifying therapeutic drug candidates.

Dr. Martins was asked about making mistakes in experiments. He replied "I make mistakes, but I'm not afraid to make mistakes," while explaining failure rate in research and the importance of confidence.

Dr. Tim Martins with ready answers on our tour

Robots! at the Quellos High Throughput Screening Core

Hands-on with Planaria and Play-dough

After our tours and lunch, we enjoyed hands-on activities with planaria and Play-dough — to model human embryonic development.

Dr. Reitha Weeks, PhD, Program Manager for Science Outreach at NWABR introduces planaria

Planaria are “the regeneration experts” explains Reitha Weeks of NWABR — if you separate one worm into 279 pieces, they grow into 279 worms!  Planaria also serve as model organisms for understanding human stem cells.

NWABR offers resources for teaching about biomedical research and ethics, including our popular Stem Cell unit with “Plenty of Planaria” to model stem cell function, development, and the complexity of tissue regeneration.

The curriculum is geared towards high school students and available for download free of charge.

Microscope, camera, and monitor loaned to us by Leica Microsystems, Inc. Thank you!

Next up, modeling early embryo development — with play-dough!

Play-dough Egg and Sperm

Jeanne Chowning, MS, Director of Education at NWABR leads the activity

Students in Dawn Tessandore's AP Biology class

Breakout Groups: Ethical Issues in Stem Cells

After the above activities, we broke out into groups to discuss ethical issues more closely. A few of the groups were photographed, as below. Group leaders and subjects included:

• TONY BLAU, MD — Stem Cell Treatments: Considering the risks and benefits of testing stem cell treatments in humans.
• DAVID EMERY, PhD — Embryonic Stem Cells: How far should we go in seeing if they can grow into embryos?
• ERICA JONLIN, PhD — Savior Siblings: “My Sister’s Keeper” – what if you were a genetic “designer baby” created to save your sick sister?
• KATHY DAVIDSON, PhD — Embryos and Research – Creation and Donation: Should researchers be allowed to encourage couples to donate embryos?
• KYLE RATTRAY, MD/PhD Program — Social Justice: Disease Research and Stem Cells: What diseases should be prioritized in stem cell research?
• CHRIS MILLER, PhD — Knowing Your Future: What Can Your DNA Tell You? How much do we want to know about the relative risks of what potentially lies ahead for us?

TONY BLAU, MD -- Stem Cell Treatments: Considering the risks and benefits of testing stem cell treatments in humans

KATHY DAVIDSON, PhD -- Embryos and Research - Creation and Donation: Should researchers be allowed to encourage couples to donate embryos?

KYLE RATTRAY, MD/PhD Program -- Social Justice: Disease Research and Stem Cells: What diseases should be prioritized in stem cell research?

Youth Ethics Summit 2011 was blogged by Brian Glanz for NWABR

Please reuse and remix! We share with a Creative Commons Attribution License.

Photography by Mohini Patel Glanz.

Youth Ethics Summit 2011 was presented by:

and

This program was supported by a Collaborations to Understand Research and Ethics (CURE), 1R25RR0251131, a Science Education Partnership Award from the National Center for Research Resources. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center for Research Resources or the National Institutes of Health.

Breast Cancer – A Patient’s Story

Spring 2010 Research Saves!

A patient’s story, especially if that patient is a scientist, can bring a sense of reality and poignancy to biomedical research. As a Ph.D. trained molecular biologist and program manager at the Northwest Association for Biomedical Research (NWABR), my story is in harmony with NWABR’s mission: to promote the understanding of biomedical research and its ethical conduct…When invited to speak at the first high school Junior Science Café of the academic year, I jumped at the chance. I titled my talk “Demystifying Breast Cancer: A Personal Tale,” hoping that I could encourage students to ask questions – to demystify something that has touched, and sometimes killed, so many… (Read More…)

(NIH grant UL1 RR025014 supports NWABR’s Speakers’ Bureau)

Henrietta Lacks: Ethics at the Intersection of Health Care and Biomedical Science

Dr. Ruth Faden

The 2011 Charles W. Bodemer Lecture was given by Dr. Ruth Faden, PhD, MPH, of the Johns Hopkins Berman Institute of Bioethics. Several NWABR staff attended and offer this account of the lecture, “Henrietta Lacks: Ethics at the Intersection of Health Care and Biomedical Science.”

Dr. Faden lectured in three segments:

1. Relating the experience of Mrs. Henrietta Lacks and her children as chronicled in The Immortal Life of Henrietta Lacks by Rebecca Skloot. Faden is friends with Skloot, as she disclosed. Included in this segment: how HeLa cells came to be.
2. Ethical considerations of consent and compensation raised by the story.
3. Examination of the story through a social justice lens.

Note: We’ve bolded ethical questions below, for emphasis.

1. About Henrietta Lacks

A poor black woman, undereducated and living in Baltimore in the 1940s, Lacks had been living with her husband, Day (David) and her 5 children while hiding a great deal of abdominal pain. Finally in 1950 she asked Day to bring her to Johns Hopkins Hospital, the only regional hospital where African Americans could receive treatment. Diagnosed with cervical cancer in February 1951, she received cervical radiation, which was the gold standard treatment of the day, under general anesthesia.

Ongoing research at Johns Hopkins by two doctors played a large part in the story: Dr. Richard TeLinde, head of gynecology and a cervical cancer expert, was researching whether different types of cervical cancer were interrelated. Dr. George Gey, head of tissue culture, had been trying for decades to grow an immortal cell line which could be used as a standard research tool. In their respective research pursuits, both Dr. TeLinde and Dr. Gey routinely used tissue samples which had been removed from patients who came to Hopkins for treatment. Henrietta Lacks was one of these patients.

Faden points out that the cervical tissue samples were not part of Mrs. Lacks cancer treatment and that in keeping with the practices of the time, Mrs. Lacks was never asked for permission. Dr. Gey was offered some of the tissue to contribute to efforts to grow the first human cells outside of the body (called tissue culture).

After just 3 weeks of trying to grow Mrs. Lacks’ cells in culture, it was clear to Dr. Gey that these cells would be the very first immortal human cells. In keeping with his system of using the first two letters of a patient’s first and last name, Dr. Gey labeled the cells “HeLa.”

Since that time these cells have made remarkable contributions to medicine including development of the polio, smallpox, and HPV vaccines, and cancer treatments, and over 80,000 medical publications. On October 4, 1951 Henrietta died without ever knowing the breakthroughs she helped provide.

Mrs. Lacks’ children and husband didn’t know that her cells were taken, bought, sold, and used — until 20 years later when her actual name was made public, without notifying her family, in the 1970’s.

Click here to view a slideshow from Skloot’s website, with photos from Lacks’ life.

Neither Johns Hopkins nor the doctors profited directly. In fact, Dr. Gey gave the cells internationally to anyone who wanted them. That isn’t to say that they did not benefit in recognition and professional reputation.

Other people have made money on HeLa cells. You can purchase them today from cell culture companies. The Lacks family never received compensation for the commercialization of HeLa cells. The family has remained poor and to this day has inconsistent health care insurance.

2. Ethical considerations still relevant today

Tissue donation is not hypothetical or a thing of the past. Anytime someone has an “opsy”—as in biopsy—or an “ectomy”—as in tonsillectomy, tissue is being removed from their body. What happens to that tissue once it has served its medical purpose of diagnosis or treatment? It can be discarded as medical waste or it can be used for research.

Creation of biobanks or biorepositories — see our previous blog posts from the event, “Do You Know Where Your DNA Is?” on biobanks — from huge sets of human tissue samples, is creating great expectations of what scientists will be able to accomplish toward predicting, preventing, and personalizing medical breakthroughs. Breakthrough hopefuls include diagnostic tests and individualized treatments for chronic disease like diabetes and heart disease.

Should patient consent be obtained for research purposes if 1) once utilized for medical purposes, the tissue would be sent to medical waste anyway? if 2) extra tissue is taken solely for research purposes, as in the case of Mrs. Lacks?

Should patients re-consent every time their tissue is used for a different study? How can patients with tissues in biobanks consent to future research that has not yet been conceived?

Should people be compensated if anyone benefits from marketable products derived from the human body? How should people be informed about discoveries resulting from the use of their tissues?

Dr. Faden quickly moved to her passion — how to examine these ethical questions through the lens of social justice.

3. Social Justice is an important lens through which to examine the ethics of science

The Twin Aims Theory of social justice is 1) “improvement of human well being” and 2) “combating densely woven patterns that compromise multiple core elements of well being.” Faden listed the core components of well being and what she calls the Essential Elements of Well Being:

1. Personal security
2. Reasoning capacities with which to think about the world
3. Respect of others as moral agents
4. Health
5. Affection and attachment
6. Self-determination (the ability to exert some control over the path of one’s own life, free from the tyranny of other people or conditions)

Dr. Faden next introduced ‘counterfactuals’ otherwise known as “What If” statements:

What if 1) the Lacks family had received compensation? What if 2) Mrs. Lacks was an affluent white person with great health insurance? Would the story still raise questions about social justice? Dr. Faden argues YES.

Of course monetary compensation would have made a difference for the Lacks family; however, it would have done little to adjust for the systemic injustices of being poor and black. (Note from Faden: Cases where someone’s body is a source of commercial value are extremely rare. More often, medical discovery is the result of hundreds of thousands of specimens and data.)

If Henrietta Lacks had been white and wealthy, Faden feels that the systematic injustice of being “disrespected by biomedical research” likely would not have been different. Mrs. Lacks’ family was in the dark; in keeping with the practice at the time, Dr. Gey and Johns Hopkins did not tell them anything about the HeLa cells for twenty years (if you read the book, you’ll note that they only told her family because they accidently learned about it from a young Hopkins researcher who happened to be a distant cousin and was using the cells in his research. He put two and two together and realized the connection when he was visiting his family).

And this is what Faden means by lack of respect. Deborah, one of the Lacks children who is featured in the story, describes her worry about her mother’s cells and her inability to learn about what happened to the cells—and by association to her mother. This worry and insecurity is what causes disconnect, disrespect, and ultimately injustice.

Dr. Ruth Faden wrapped up her presentation with what may have been the most interesting examination — The Collective Action Problem of the current profit model that drives scientific discovery. Also called the Reciprocity Model, it acknowledges that even though I may not directly benefit my contribution and you may not directly benefit your contribution, our communal contributions may benefit each other.

Without communal action toward a common goal, the goal will not be realized. Advancing medical progress faces this problem. In medical research and biorepositories in particular there is need for a critical mass of people to donate tissue, blood, and health data. Not just any people—all people from all ethnic and racial backgrounds. Without access to many samples there will not be benefit for anyone. This was her call to public participation, the 4th “P” of P4 Medicine, as coined by Seattle’s Leroy Hood of the Institute for Systems Biology.

Do you want to participate in research? Sign up as a volunteer with ResearchMatch.org, an anonymous volunteer matching service funded by the National Center for Research Resources, part of the National Institutes of Health. Explore opportunities to donate blood and tissue for research. Participate in public dialogue about medical research and ethics.

Faden envisions a society in the near future without the expectation of monetary compensation for research participation, because we understand that medical progress will benefit everyone. Do you?

Charles W. Bodemer

Who was Charles Bodemer and why have an annual lecture series?

Bodemer was the founder of the University of Washington School of Medicine, Department of Bioethics & Humanities, serving as chair from 1967 to 1985.

Bodemer “had a distinguished career as a research scientist before dedicating his energies to his other love: the history of medicine.”

For more, please see http://depts.washington.edu/bhdept/conedu/Bodemer.html.

Data collection and privacy

Edwards describes that there are a variety of decisions being made about how specimens are collected, how much information to keep, and on what are minimum standards of privacy and security in various areas.

She asks everyone in the room — do you know that you have, or do you think that you have, your own specimens or data in a biobank? About half the room raises a hand, many tentatively. Edwards then explains there are many ways our tissues or data are collected that we may not be aware of, even being collected at birth.

There are two trends in biobank privacy. In one, greater anonymization has led to stripping more personal identifiers from samples and data.

Another trend is in the opposite direction, though: in some repositories, a tight link is being kept between personal identifiers and a person’s samples and other data. Advocacy-based biobanks tend toward this trend.

The reasons include that people can manage and access their own data and larger medical and/or research profiles. In some cases, people can track the use of their data in research.

This latter trend is more complicated, ethically and practically, but it may also lead to greater benefits in science and in public understanding.

Russell notes that GAPPS enrolls women at their first pre-natal visit, not knowing who may end up with a pre-term birth or other relevant circumstance. This is a very expensive operation, but even so they spend a lot of time in education and in verifying that strict rules have been followed to collect enough and valid data.

Sewards then describes the issues in greater detail — when do you ask for consent? What does the consent form look like? A concern of hers is adding greater context to consent.

Introducing our panelists

Moderator Gretchen Sorensen introduces our panelists:

Kelly Edwards, PhD is Associate Professor, Department of Bioethics and Humanities at the University of Washington School of Medicine. Edwards is core faculty for the Institute for Public Health Genetics and the Critical Medical Humanities Research Cluster. For more, see her bio in the Department of Bioethics and Humanities.

Edwards describes the questions she helps others consider in her work as a bioethics consultant, often regarding biorepositories. Questions are sometimes  about recruitment and communications to potential recruits, such as “How should we handle consent?” Other questions surround data access, i.e. who has or should have access to data from the repository?

Shannon Sewards is Assistant Director for Operations, Human Subjects Division at the University of Washington. “What is ‘the human subjects division’ all about?” muses Sorensen, noting the intriguing name, before answering simply that it’s “anything that involves research on a person.” For further clarification we offer the following, from the division’s home page:

“Research involving human subjects must be reviewed and approved by an Institutional Review Board (IRB). At the UW, several IRB committees serve this function. The Human Subjects Division (HSD) provides administrative support and facilitates IRB review; assisting researchers throughout the process.”

Sewards describes that the role of IRBs is to be protective for the general public, while they can be a hindrance, relatively speaking for researchers.

Donna Russell, MHA is Director of Research Development and GAPPS at Seattle Children’s. GAPPS is the Global Alliance to Prevent Prematurity and Stillbirth, whose expanded mission includes maternal, newborn, and child health with a global scope.

Russell notes that GAPPS began because of the magnitude of the problem of pre-term birth, here in the U.S. and globally. 13 million pre-term births happen annually around the world, and 1 million of those are fatal. There are also 3 million still births.

That means there are more than ten times the number of still births as there are “SIDS” deaths. SIDS is relatively well publicized while still birth is not.

We still, fundamentally do not know what causes many of these deaths. The best strategy for solving the mystery is to link high quality specimens to descriptive data.

Therefore a cornerstone of GAPPS is their biorepository. They just started collecting data in the last year, after two years of preparation and addressing many of the issues we will discuss today.

A fundamental ethical question for GAPPS is that pregnant woman are a vulnerable population.

Edwards, Russell, and Sewards are introduced by Sorensen

The Immortal Life of Henrietta Lacks Discussion Guide Available!

Download Discussion Guide

NWABR is proud to announce the availability of a discussion guide to enhance active reading and consideration of issues raised in The Immortal Life of Henrietta Lacks (Crown Publishers, 2010). This guide is open for use by anyone who would like to facilitate discussions or personally reflect on lessons from the book.

The Immortal Life of Henrietta Lacks is journalist Rebecca Skloot’s quest to tell the true story about the woman (and her family) whose cancer cells were the first human cells grown successfully in a laboratory. Skloot masterfully opens the door for readers to explore current bioethics issues that are surprisingly relevant to most, if not all, people. The story is one of cutting edge biomedical research, potential harms and benefits of participating in research, the nature and purpose of information gleaned from our bodies, the influence of faith and family history on the way people perceive their experiences, and the great potential of relationships to heal or deepen our wounds. The opportunity to discuss lessons from this book for us as researchers and research participants is rich; we all have much to learn regarding what is important in building research practices that are trustworthy, ethical and effective.

To learn more about the author or book, visit Rebecca Skloot’s website where she also features our discussion guide: http://rebeccaskloot.com/the-immortal-life.

The Immortal Life of Henrietta Lacks: A Discussion Guide is a collaboration between Northwest Association for Biomedical Research and University of Washington with funding from NIH grant 1 UL1 RR 025014.