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The Sale of Fetal Tissue


Virtually everyone is familiar with Mitch Albom’s book, Tuesdays With Morrie. Myra Christopher (Foley Chair at the Center and former Center CEO) and Rosemary Flanigan (Retired Center Program Staff) have decided to regularly contribute to the Center for Practical Bioethics’ blog and call it “Tuesdays with Rosemary and Myra” (even though it won’t necessarily be published on a Tuesday). Read more about Rosemary and Myra at the bottom of this post.

The Sale of Fetal Tissue

M:  Rosemary, you know all the hub-bub about the video of the executive from Planned Parenthood being caught on tape talking about the sale of fetal tissue to two people posing as employees of a company looking to procure fetal tissue for research purposes. It’s been all over the Internet…

R:  I do know about it. It’s gone viral!

M:  It certainly has, and it has provided fodder for those hoping to be nominated by one of the parties for the 2016 presidential election. The video has been proven to be an example of “hit and run” journalism, but that doesn’t negate the ethical question that underpins it, i.e., “Is it acceptable to sell fetal tissue?” And that’s what I want to talk about.

R:  And I want to ask is there any difference in fetal tissue and other human tissue, all of which gets “sold.”


R:  Of course, there is something special about fetal tissue, but does that mean that it can’t be used for research. It’s not the same kind of tissue that comes off your elbow…

M:  Why not? What makes it different?

R:  It is because of the potentiality involved in what it can or could become, but let’s don’t have an argument about that right now. Even though it will certainly come up in our argument later, I’m still going to say that fetal tissue can be used for research purposes.

M:  Okay, but your first claim reminds me of one that Don Marquis, a philosopher at Kansas University, made in an argument against abortion years ago in an article he wrote for the Center. He said the difference between tissue from your elbow and a fetus is that the elbow has a past, i.e., we know something about the arm it hinged, but has no future, whereas a fetus has a future but no past that could reveal anything about its history or values. Is that your argument?

R:  No! It’s not just about tissue’s history; I am trying to skirt intrinsic worth. So, don’t you push me into talking about that, Myra Christopher. I hate objective whatevers!

M:  Whatevers? Sorry, Rosemary, but I want to push you just a little. Most all of us will say that human life is sacred/special, and what I want to talk about may align with your “potentiality” comment, but it may not; I don’t know. But I want to talk to you about the difference between human tissue and a human “being.”

R: I would find it morally reprehensible to use fetal tissue for insignificant research purposes.

M: You‘re still avoiding my issue, but OK….  Insignificant research like what?

R:  I’m trying to get circumstances involved here so that they cast a moral evaluation on their use in one instance and their not being used in another. For example, I would not object to fetal stem cells being used to find cures for cystic fibrosis or sickle cell disease, but I would find it morally reprehensible to use fetal tissue to find a better face cream and make old women look younger.

M:  I agree. I think it is repulsive. It reminds me of the former chair of the President’s Bioethics Commission Leon Kass’s determination based on what he called the “yuck factor”, i.e., if it is just plain old gross, it may be just plain old wrong.

R:  I’ve thought this for a long time, and there is something to be said that should lead us to reflect on why we feel the “yuck”, and maybe in some instances it should cause something to be tagged “unethical”, but in other instances it may simply be a societal “no-no”.

M: I think the point you are getting to is important – not just in this discussion, but in many arguments claimed to be “ethical arguments”. There are important distinctions that should be made between ethics, social norms, etiquette, and the aesthetic.

Last night, I was thinking about us possibly blogging about this topic today, and I remembered being at a women’s rights rally once and a person claiming to be absolutely opposed to abortion was walking around trying to force people to look at an aborted fetus she had in a box. It struck me as the epitomy of irony that a person crusading for the sanctity of life would objectify a fetus for political purposes. 

R:  Poor soul! She was very confused. 

M:  Rosemary, when I was thinking about this last night, I thought about the many, many times I have heard you ask (when teaching ethics committee members), “Is it wrong to torture little children?”

R:  “Needlessly, needlessly torturing little children!” Is what I asked? The point behind that was that, most often, general rules need to have adverbs to make them valid and true.

M:  I agree and add that speaking in “absolute” terms almost always forces you into a corner. But I want to go back to the distinction I need to make between human “tissue” and human “beings” Because it is critical to my position.

For me, “being” implies “personhood” and by that I mean an independent individual whether 1 day old or 100 years old. I would argue that it applies only to fetuses that are sustainable independent of the mother.

R:  You’re not placing the same meaning on potentiality that I am. So, you and I will have a different argument because we differ in the meaning of the potentiality involved in the fetus. That is so simple to me. You want to say that the point of differentiation is when it (the fetus) can live on its own. I say that is not the point; we have to respect it until it gets there; so I am going to call for more heavy arguments for the use of fetal tissue than you would before it is sustainable.

What I'm saying is that justification for use of fetal tissue ought to be weightier the closer the fetus comes to live birth before being aborted. I'm trying to show that potentiality develops and thus the arguments must take that development into account.

M:  I think that’s true. However, I think at a certain point in the development of the fetus our lines cross, and we find ourselves at the same place. However, I want to say that I agree wholeheartedly that fetal tissue, no matter the gestational age of the fetus from which it comes, should always be treated with respect. 

I am reminded of a situation years ago, probably 20 years ago, when a faith-based hospital reached out to the Center for help in deciding what to do with fetal tissue that was not suitable for research. Fertility specialists in their institution were burning such tissue in trash cans in their clinic. That is one extreme. Another was a time when the Center was contacted by a hospital because a group was demanding that the hospital “bury” fetuses with a proper ceremony – no matter its gestational stage.

R:  Why do you call burning tissue in a trash can an extreme?

M:  Good question, because I wouldn’t find it objectionable to burn it in the hospital’s incinerator.  I think the “aesthetics” of the situation were objectionable to me. The whole idea that it was “trash” bothered me and others in the hospital. 

R:  I see it’s not the “burning”; it’s the “trash” that bothers you. So much of these arguments depend on the way we use language and define specific terms.

M: Back to the Planned Parenthood fiasco; I think we agree and disagree about components of this situation. Although we get there along different paths, we agree that when used for significant research that could potentially help people living with disease and injury AND when conducted in done in a way that is respectful of the “donation”, the use of fetal tissue in research can be justified.

However, there are other important factors as well, including “tone”, context, and intent when in discussion about ethically sensitive issues.

About Rosemary and Myra

For several years before her retirement, Rosemary facilitated an online discussion group, primarily for ethics committee members, which had a faithful following. We hope some who participated and others will read our blog posts and respond with their thoughts on whatever subject we are writing about. We would also be grateful if you would provide suggestions for future blog topics. With your help, the two of us are moving into the 21st century, but for Pete’s sake, don’t expect us to tweet!

We have decided to write a regular blog for several reasons. First, there has never been a greater need for ethical reflection than there is today. We both agree about that, but we are very different people, and often disagree on issues. We hope it will be helpful for us to model respectful disagreement. In addition, we just finished writing a history of the Center which took us three years, and we enjoyed doing that so much that we need an excuse to continue writing together on a weekly basis. So, we don’t mind bothering you with our ideas.

I call myself a “philosophical Christian agnostic” and Rosemary is a member of the Sisters of St. Joseph of Carondolet. Rosemary taught high school English and philosophy at Rockhurst University. She is a stickler for the “King’s English” and proper grammar. I grew up in Texas and just like to talk. We are both old; I turned 68 in July; Rosemary is older. We both have had training and education in ethics, but Rosemary has a PhD. We have both worked in bioethics for many years, and we both LOVE to argue. As Rosemary says, “Doing ethics is all about argument.” But ethics is not about mean-spirited disrespectful exchanges that are so prevalent today in a “red-state/blue-state culture.” Through blogging, we hope that our agreements and disagreements will demonstrate that we can argue respectfully and still love and care about one another.

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Rapping about Dying

ZDoggMD is something of a celebrity among physicians and medical students. He is the “Weird Al” Yankovic of the medical world – parody songwriter extraordinaire, satirist of medical culture and, at his best, a seriously funny human being. Whether lampooning hospital readmissions or mocking anti-vaxxers, his music videos bring humor to physicians’ challenges as well as their follies.

But listen closely and you will find that, beneath the humor, there often lies a serious message in ZDoggMD’s lyrics. The parodies aim to entertain healthcare workers, of course. But they also seek to educate. “Let’s just prevent readmissions/manage those chronic conditions/need time preparing the handoffs/move along to other clinicians,” he raps in “Readmission,” a parody of the R&B hit “Ignition (remix).” In the music video, ZDoggMD utters these lines in a hospital ward, wearing a lavish fur coat and sunglasses in the fashion of a rap musician. The routine is absurd – and funny – but the goal is more than mere entertainment. ZDoggMD’s light touch of humor warms us up for a serious conversation on a topic that is no laughing matter.

Ain’t the Way to Die

For his latest video, “Ain’t the Way to Die” (a parody of Eminem’s “Love the Way You Lie”), ZDoggMD forgoes humor altogether – a first, according to his blog. Stripping away humor, the song takes a more direct approach to talking seriously about a topic that many of us prefer to avoid – death and dying. As ZDoggMD writes, “…we too often fail to have those difficult but crucial discussions about dying, and this failure leads to untold human suffering and billions in squandered resources. We are failing as caregivers, we are failing as family members, and we are failing as individuals – failing to simply have a conversation that ensures that we direct our own destiny. Plainly put, we need to talk about dying.”

Talking about dying is hard. It’s uncomfortable. As a medical student, I’ve become acutely aware of the discomfort. I feel it too, even as an observer. For all of us, the challenge is to communicate effectively about death and dying in spite of the discomfort, and in that regard ZDoggMD’s sentiment too often rings true: We are failing as caregivers, family members, and individuals to have these crucial conversation about the end of life.

Conversation Starter

Thankfully, there are people working to make these conversations a little easier. Caring Conversations, a resource developed by the Center for Practical Bioethics, for years has guided patients and their families through the process of advanced care planning. In its own way, ZDoggMD’s “Ain’t the Way to Die” can also facilitate these conversations, by melodically breaking the ice on death and dying: “Just gonna stand there and watch me burn/end of life and all my wishes go unheard/they just prolong me and don’t ask why/it’s not right because this ain’t the way to die, ain’t the way to die.” 

The musical stylings may be off-putting to some, but for those who enjoy rap music – and those who can tolerate it – the lyrics of “Ain’t the Way to Die” succeed in broaching a wide range of end-of-life issues, from family discord to resuscitation. And this brings us to what is perhaps the greatest virtue of “Ain’t the Way to Die” – that the breadth of issues addressed in the short video makes the parody a conversation-starter for healthcare workers and patients alike.  

All of us must find a way to communicate clearly in conversations about the end of life. “Ain’t the Way to Die” may help some of us find the words to do so. With that in mind, I encourage you to watch the video and share it with others.  No matter one’s background or profession, each of us will one day face the end of life. Starting a conversation about how you want to face it gives you the best shot at doing it on your own terms. 

Written By Joel Burnett. Joel Burnett is an MD candidate at the University of Kansas School of Medicine.

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Strengthening Hospital Ethics Committees

The first hospital ethics committees in the nation were established in the 1970s, and the primary catalyst for their growth was the 1976 Karen Quinlan case. As the case was argued, the judge, who had read an article about ethics committees in the Baylor Law Review, remarked that cases like this belong before ethics committees rather than courts.

In 1992, the Joint Commission – then the Joint Commission for the Accreditation of Healthcare Organizations – mandated that hospitals establish a clinical ethics “mechanism.” For more than two decades, this guidance has allowed hospitals to craft widely varied responses. A facility may or may not have a standing ethics committee. The committee may or may not meet regularly. Its members may or may not have training in thinking through issues ethically.

The three primary functions of ethics committees, as identified by the American Hospital Association in 1986, are to:
• Educate themselves to “do ethics”
• Develop and review hospital policies
• Consult on complex cases arising in the hospital

Center for Practical Bioethics’ Efforts

In 1986, in response to numerous ethics committee members seeking opportunities to learn from each other, the Center for Practical Bioethics, which counseled both sides of the Cruzan case, convened the Kansas City Regional Hospital Ethics Committee Consortium, This is the oldest continuously operating Consortium of its kind in the nation.

In a project entitled “Organizational Ethics: Beyond Compliance,” Center staff traveled to cities across the country to present new standards for patients’ rights and organizational ethics, after collaborating with the Joint Commission in 1993 to promulgate them.

The Center has trained more than 200 hospital ethics committees across the country. Today, as a benefit of Center membership, Center staff members serve on the ethics committees of several hospitals in the Kansas City metro area. Many of these committees have made significant strides in strengthening their individual approaches to meeting the requirement for an “ethics mechanism, ” as illustrated by activities at Shawnee Mission Health, Liberty Hospital and North Kansas City Hospital.

Consultation Team Model

For many years, the ethics committee at Shawnee Mission Health (SMH) in Shawnee Mission, Kansas – one of the oldest ethics committees in the Kansas City area – met monthly at 7:30 am. On average, 20 of the committee’s approximately 30 members, including the hospital CEO and CFO, would attend. From time to time along with the committee members, clinicians and allied health practitioners would gather in response to a request for a formal “ethics consultation.” This “call” could result in a rather large group for an ethics consultation, and while the expertise was appreciated, the committee realized that family members and friends could find the process overwhelming. SMH envisioned a process that would be more intentionally responsive to its commitment to person-centered care and shared-decision making.

In Spring 2014, SMH asked Sandy Silva, vice president of education at the Center, and Mark Stoddart, the health system’s administrative director of spiritual wellness, to serve as committee co-chairs and encouraged them to explore alternative models for its operation. Silva proposed the consultation team model.

“Rather than call for ethics consults with the assumption that there’s a problem or something bad happened,” she said, “the idea is to cultivate and invite ethics questions. We want to create a mechanism for people to receive a nimble response to their questions, whether from a patient, family member or member of an SMH interdisciplinary care team.”

At the same time, the committee formed two three-person consultation teams with backups. Team leaders can be reached immediately depending which team is on call. If the leader can’t answer a question right away, he or she gathers appropriate records and contacts team members and others involved in the case. The model is designed so that the need to bring the full committee together to address a question will be rare.

“This model is appropriate and effective for the SMH culture,” said Silva. “No matter how small a question, providers, families and patients will know that if they have an ethics question they can get an immediate response. It’s about facilitating communication that is timely and responsive.”

At SMH, there is a dual-pronged emphasis on consultation effectiveness as well as education.  SMH provided consultation team members with a personal copy of Guidance for Healthcare Ethics Committees (Cambridge Medicine, 2012). The members of the consultation teams (including back-up members) meet quarterly to review assigned chapters to take a deeper dive into the material as well as discern its application for their hospital system.

Focus on Education

The focus on education is observable at SMH as well as at other hospitals in the region.

The full complement of the SMH ethics committee now gathers bi-monthly for mid-day meetings that include lunch sponsored by SMH. The agenda includes a review of any ethical questions and/or consultations that may have taken place over the ensuing 60 days. The emphasis, however, is on education regarding ethically linked trends and cases within the SMH sphere.  Silva and Stoddart envision this educational emphasis as the forum to offer continuing education credit that will be open to all SMH clinicians and staff.

Education is also a cornerstone of ethics committee invigoration efforts at North Kansas City Hospital and Liberty Hospital in Missouri. North Kansas City Hospital has invested in providing Guidance for Healthcare Ethics Committees to all members of their ethics committees and prioritized education as a key activity. The ethics committee chair at North Kansas City assigns chapters of the textbook to a specific member to present when the group convenes bi-monthly. While the “assignment” may be moderately ambiguous for the presenter, the presentation serves as the springboard for full committee analysis and discussion.

At Liberty Hospital, there is a resurgence of interest and dedication to the work of their ethics committee. Leaders in the hospital system from both the clinical and spiritual realms of healthcare have raised their hands to acknowledge the hospital’s decades-long commitment to quality care based on ethical principals and to support renewed emphasis on education as well as timely response to ethical questions from patients, families and staff. The immediate focus is on the revision of an online administered education module for hospital staff.

“It’s gratifying to see members of these hospitals’ ethics committees actively participating in the Kansas City Regional Hospital Ethics Committee Consortium,” said Silva. “Strengthening ethics committees is a significant part of the Center’s history and continues as a key component of our efforts to provide practical resources to those wrestling with complex ethical questions.”
Download free print, audio and video resources about ethics committees at

Trudi Galblum provides marketing and communications support for the Center for Practical Bioethics.

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Tuesdays With Rosemary and Myra

Virtually everyone is familiar with Mitch Albom’s book, Tuesdays With Morrie. Myra Christopher and Rosemary Flanigan have decided to regularly contribute to the Center for Practical Bioethics’ blog and call it “Tuesdays with Rosemary and Myra” (even though it won’t necessarily be published on a Tuesday). The words will come from Myra’s pen (actually her computer), but the writing will happen together.

Why We Are Blogging

For several years before her retirement, Rosemary facilitated an online discussion group, primarily for ethics committee members, which had a faithful following. We hope some who participated and others will read our blog posts and respond with their thoughts on whatever subject we are writing about. We would also be grateful if you would provide suggestions for future blog topics. With your help, the two of us are moving into the 21st century, but for Pete’s sake, don’t expect us to tweet!

We have decided to write a regular blog for several reasons. First, there has never been a greater need for ethical reflection than there is today. We both agree about that, but we are very different people, and often disagree on issues. We hope it will be helpful for us to model respectful disagreement. In addition, we just finished writing a history of the Center which took us three years, and we enjoyed doing that so much that we need an excuse to continue writing together on a weekly basis. So, we don’t mind bothering you with our ideas.

I call myself a “philosophical Christian agnostic” and Rosemary is a member of the Sisters of St. Joseph of Carondolet. Rosemary taught high school English and philosophy at Rockhurst University. She is a stickler for the “King’s English” and proper grammar. I grew up in Texas and just like to talk. We are both old; I turned 68 in July; Rosemary is older. We both have had training and education in ethics, but Rosemary has a PhD. We have both worked in bioethics for many years, and we both LOVE to argue. As Rosemary says, “Doing ethics is all about argument.” But ethics is not about mean-spirited disrespectful exchanges that are so prevalent today in a “red-state/blue-state culture.” Through blogging, we hope that our agreements and disagreements will demonstrate that we can argue respectfully and still love and care about one another.

Blowing Smoke vs. Shocking with Electricity

Rosemary and I decided to focus our inaugural blog post on efforts to resuscitate the newly dead because on August 12, the Center will host David Casarett, MD, author of Shocked: Adventures in Reviving the Recently Dead, to deliver the 21st Rosemary Flanigan Lecture which will, as always, be held at the St. Joseph Medical Center. David is a physician/bioethicist at the University of Pennsylvania, and he will talk about his book, which is a history of resuscitation methods, including some that are REALLY weird, such as blowing cigar smoke into the rectum of someone who has died. GEEZ!! Can you imagine? However, we all know that tobacco, i.e., nicotine is a cardiac stimulant. (I still remember the first time I smoked and recall that it was great and took me ten years to stop in part because I loved the rush it gave me.) So, the theory was that “blowing smoke” could possibly revive a dead person, and as distasteful as it might seem, it was worth trying. (Or maybe they were just sickos….)

Is this really any stranger than resuscitating ALL those who die in our hospitals UNLESS the poor soul’s doctor has written a DNR (Do No Resuscitate) order? Is it stranger than policy based on our society’s belief that “anything is better than dying”, including the things we do to those who die in our hospitals today? Stranger than when someone calls a “Code Blue” over the hospital’s PA, people run down the hall with a crash cart? Then someone pounds on the deceased’s chest, inject stimulants directly into his or her heart, and/or shocks them with electricity? The two of us think that, in many instances, the current practice seems just as odd as blowing smoke up a dead person’s rear. We wonder if healthcare professionals have thought about adding a cigar to crash carts ...

August 12 Flanigan Lecture

Please join us on August 12 to hear Dr. Casarett talk about his research and all the weird things he discovered while writing Shocked (you won’t even believe it), and to also discuss this important healthcare policy issue with him. If you are not able to be in KC for the lecture, it will be videotaped and posted on the Center’s website shortly thereafter. Regardless whether you are there or not, we encourage you to tell us what you think about the universal application of CPR for those who die in hospitals by commenting on this blog post.

For more information about the Flanigan Lecture or other Center events, go to the Center’s website at

Myra Christopher is the Kathleen M. Foley Chair for Pain and Palliative Care at the Center for Practical Bioethics. Rosemary Flanigan, PhD, joined the Center’s board in 1986, was its chairwoman in 1991 and, for 17 years following her 1992 retirement from Rockhurst University, served on the Center’s staff.

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A Step Toward a Cultural Transformation in the Way Pain is Perceived, Judged and Treated

The following blog post is the executive summary of the June 29-30, 2015, PAINS Collaborators Meeting in Washington, DC, held in response to Department of Health and Human Services’ publication of the National Pain Strategy Report. 


In anticipation of publication of the National Pain Strategy (NPS) Report, in June 2015 the Pain Action Alliance to Implement a National Strategy (PAINS), a coalition of national leaders and organizations committed to advancing the sixteen recommendations made in the Institutes of Medicine’s report, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research, convened a Collaborators Conference in Washington, DC. The purpose of the meeting was to discern opportunities and challenges to implementation of the report, to build enthusiasm for it and promote collaboration among attendees in order to move the NPS Report from a vision to a reality. More than 100 prominent leaders from professional societies, academic institutions, federal agencies, patient advocacy groups, and policy organizations met to review the NPS Report and discuss each of its six sections.

In April 2015, the NPS Report underwent preliminary review by multiple federal agencies and was then posted in the Federal Register for public commentary. In opening remarks, Walter Koroshetz, Director of the National Institute of Neurological Disorders and Stroke (NINDS), told attendees that more than 770 responses were received and the plan is expected to be released in the late summer/early fall. Expectations for it are high. The report’s vision states, “If the objectives of the National Pain Strategy are achieved, the nation would see a decrease in prevalence across the continuum of pain, from acute, to chronic, to high-impact chronic pain, and across the life span from pediatric through geriatric populations, to end of life, which would reduce the burden of pain for individuals, families, and society as a whole. Americans experiencing pain — across this broad continuum — would have timely access to a care system that meets their bio-psychosocial needs and takes into account individual preferences, risks, and social contexts. In other words, they would receive patient-centered care.”

PAINS surveyed participants prior to the meeting and found that overall, the NPS Report was well received by respondents, and stakeholders expressed appreciation and support for it. One respondent said about the report, “It presents a rare opportunity for cultural change with across-the-board goals and strategies.” The three foci in which attendees were most interested were:  professional education and training (72.7%), public education and communication (69.7%) and prevention and care (57.6%).

However, concerns were also expressed about the lack of specificity and accountability, the absence of a timeline, and the fact that there has been no appropriation of funding designated for implementation of the plan.  


In the opening keynote address of the two-day conference, Dr. Sean Mackey, co-chair of the NPS Report Oversight committee, said, “Eighty incredibly dedicated national experts covering a wide range of the bio-psychosocial aspects of pain – including expertise from clinical and public health, legal, ethical and payment, including both traditional and complementary medicine – volunteered their time to develop the plan.” He introduced the concept of “high-impact chronic pain,” which the NPS Report defines as “pain associated with substantial restriction of participation in work, social, and self-care activities for six months or more.” Mackey said that doing so was meant to address challenges there have been to the IOM report’s claim that “at least 100 million Americans live with chronic pain…. and that there is a clear need to better understand the numbers of people with high-impact chronic pain, how to provide them with the best care to avoid both under- and over-treatment, and to identify those at risk for developing high-impact chronic pain after injury or surgery.” He said, “The NPS is a great document. It is not a perfect document.” He urged those present and others committed to transforming pain care in America not to pick the document apart, but to support it in its entirety. He also argued for the development of clear messaging explaining what the NPS Report is and what it is not.  Compellingly, he asked all those present to speak with one voice and not let the perfect be the enemy of the good.


In brief reports, members of the six NPS Workgroups presented highlights of the section of the report they worked on, shared personal observations and then engaged with all those present in robust conversation. Key elements of those included:

• The need for research, including population, basic science, clinical translational, comparative effectiveness, and quality improvement were all discussed. Greg Terman, member of the NPS Oversight Committee, said that with the help of others at CDC and NIH, a set of pain questions are being developed to be included in the National Health Interview Survey.

• The importance of addressing historic disparities in health and healthcare was recognized as critical to successful implementation of the report in that they permeate the entire report. Nadine Gracia, Deputy Assistant secretary for Minority Health, cautioned that “culturally and linguistically appropriate language” must be incorporated in education and communication efforts called for in the report.

• Learning from efforts of the Department of Defense to improve pain care for veterans that have preceded the NPS Report was promoted by Dr. Chester “Trip” Buckenmaier in his report on Care and Prevention. In particular, he encouraged consideration of the Pain Assessment Screening Tool and Outcomes Registry (PASTOR), the Patient Reported Outcome Measurement Improvement Survey (PROMIS) and Computer Adaptive Testing (CAT).

• On behalf of the Service Delivery and Reimbursement Workgroup, Marianne Udow-Phillips cautioned attendees not “to think that we are going to abandon fee-for-service” because she said large self-insured employers like it. Everyone recognized improved reimbursement as a keystone issue. Udow-Phillips encouraged the audience by saying that there is interest among payers in programs that improve quality and save money.  She called for small pilot programs to demonstrate the feasibility and efficacy of comprehensive pain care, including exploration of “fee-for-service with incentives.” 

• Although professional education and training is recognized as critically important, 
Dr. Mac Gallagher, reporting on behalf of the Professional Education and Training Section, said, “We can’t wait for the medical schools and licensure groups to change.” Attendees were enthusiastic about and supportive of the NIH Pain Consortium’s program to develop Centers of Excellence in Pain Education. However, Dr. Dave Davis, Senior Director of Continuing Education and Improvement at the Association of American Medical Colleges, agreed with Gallagher and encouraged more focus on continuing medical education for practicing clinicians, including biomedical, behavioral and complementary therapies. He also pointed to the importance of IEPs (inter-professional education programs).

• Penney Cowan, co-chair of the Public Education and Communication Workgroup, reported that two public education campaigns were recommended by the group. The priority campaign being an extensive public awareness campaign about chronic pain and the secondary campaign being on safe medication use by patients. Four “core messages” developed by the Chronic Pain Advocacy Task Force (CPATF), a coalition of 17 consumer advocacy organizations, were presented. The messages clearly resonated with meeting attendees and became a major focus of actions following the conference.


Outside experts provided input and perspective for consideration from public health, politics, and addiction advocacy. Dr. Georges Benjamin, Executive Director of the American Public Health Association, encouraged the use of patient narratives about those living with extreme chronic pain. He also encouraged gaining more clarity about the problem and reframing discussion using more of a public health framework. Dr. Keith Wailoo, historian and author of Pain: A Political History, shared how concerns about disability, physician assisted suicide, the “War on Drugs,” and dramatic increases in addiction to prescription pain medications have shaped pain policy over the last seven decades and impacted the lives of those living with chronic pain. He also discussed how the so-called “red state vs. blue state” worldview negatively impacts those who live with chronic pain and other diseases, including addiction. Dr. Jeff Levi, CEO of Trust for America’s Health, began his presentation by saying, “All politics, perhaps especially health politics, is personal.” He said that “the pain community starts with the individual in pain and wants to find the best solutions for that individual…. The substance abuse prevention world starts with preventing addiction and looks in particular to find structural interventions that make it harder for someone to become addicted.” Dr. Levi, as had others throughout the day, called for finding common ground and suggested specific strategies for doing so, with one of those strategies being to focus on harm reduction.


One the second day of the conference, participants broke out into groups focused on each section of the report and then shared thoughts and ideas about how to advance the strategies and objectives in the NPS Report. Those reports are incorporated in the full report in their entirety.

Key to the success of the meeting was the involvement of people living with chronic pain – a highly successful environmental lawyer injured in a bicycling accident fifteen years ago, a professor of bioethics and public health born with sickle cell disease, and Cindy Steinberg, a person who experienced a “crushing accident” more than a decade ago who has become a self-educated policy wonk and now dedicates her life advocating for better care for the 100 million Americans who live with chronic pain. 

Ms. Steinberg was the closing keynote speaker for PAINS Collaborators Meeting. In an impassioned appeal, she called for PAINS and all those present to do four things:
1) Endorse the four core messages developed by CPATF.
2) Develop op-eds in support of the NPS Report at the time of its release.
3) Advocate for peer reviewed articles about the Report.
4) Work together to develop a national communication strategy in time for Pain Awareness Month in September. 

Based on a robust evaluation plan, PAINS believes the Collaborators Meeting achieved the goals that had been set for it. (Perceptions and opinions of attendees regarding the meeting are included entirely as received.) One reason PAINS invested significant resources into evaluation was to assess attendees’ views about the role of PAINS in implementation of the National Pain Strategy Report. Based on responses to a meeting with key national leaders immediately following the conference, responses to a post-meeting survey, emails received from attendees, and a report from the meeting facilitator, PAINS believes that its greatest contribution is to continue to serve in the role of neutral convener and facilitator of collaboration among the many groups committed to advancing the NPS Report.

The conclusion of the report states the obvious, “A cultural transformation in the way pain is perceived, judged and treated” will require almost unimaginable resources, numbers of organizations and committed individuals, political will, and changes in attitudes. However, the dialogue, discourse and enthusiasm at the PAINS Collaborators Meeting encouraged those who convened and planned it and gave hope to all those present that the U.S. is at the precipice of a cultural shift in the way chronic pain is managed. The report’s vision can become reality, but there is much to be done. There is no time to rest on one’s laurels. As Henry Ford once said, “Coming together is a beginning, staying together is progress and working together is success.”

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Paying for Medicare Advance Care Planning Puts “Duty to Share” Squarely on the Patient

Why is it that Americans seem to be the only people on the planet who live their lives as though death were an optional event? For many of us who have worked for years helping families and clinicians grapple with difficult choices in “shared decision making,” we’ve been challenged by that convention despite the evidence that 75% of us claim that preparing a living will and appointing a healthcare proxy are critically important. Yet fewer than one third of us do anything to make it happen.

Perhaps it’s our willing adherence to myths; most notably our believing that when the time comes, we’ll know, and we’ll have time to get our affairs in order, making our wishes known. This “just-in-time” approach may be comforting but, in reality, it’s magical thinking. For most of us, the “right time” never comes, but the crisis does. Believing in a scenario that we’ll luck into a peaceful passing without ever having so much as an uncomfortable conversation with anyone doesn’t support the reality that 80% of us will eventually rely on a proxy to make decisions for us.

Beyond “Just in Time”

So, how do we prepare for the realities of dying? First, name someone to speak for you when you cannot speak for yourself. But don’t stop there. Talk with that person about what matters most to you. Proxies need to be ready to respond to uncertainties, in a way that you would. Commit to ongoing conversations with loved ones and health providers, so your values and preferences are truly “shared.”

On July 8, the Centers for Medicare and Medicaid proposed new rules to pay for these conversations beginning January 2016.  If all goes as planned, Medicare will begin reimbursing providers for engaging in these discussions. That’s good news, because evidence shows that when patients’ expressed wishes are honored, survivors and clinicians report higher satisfaction because treatments align with goals. Anxiety and crises abate.

The Most Important Decisions

Before beginning this overdue conversation about values and preferences in end of life decision making, let’s examine a caution. Our tendency in healthcare is to “medicalize” everything. Getting older is not a disease. The most important decisions you and your proxy will have to make aren’t medical ones. They are emotional, social and spiritual. Death is not a medical event so much as it is a human, community experience.

So, before you take advantage of Medicare’s “advance care planning,” know what you want to say. You don’t have to be ready to answer questions about what kinds of treatments you do or don’t want, because research also shows that we’re not very good at predicting how we will feel about them in the future anyway. Instead, share values, what it means to be fulfilled, how important it is to know the details of your illness, what gives life meaning, and what a “complete life” looks like to you. Those are the kinds of things that will help your decision makers stand in and up for you when the time comes. 

Take advantage of the Center for Practical Bioethics’ resource, Caring Conversations®, available online for free (or in print for a nominal fee). There are no right and wrong answers, but there can be peace of mind. We know – and now Medicare agrees – that talking before the crisis can work. It leads to more favorable outcomes and higher likelihood that preferences get honored. Satisfaction improves. Patient-centered outcomes matter to everyone. Helping providers find that path is a duty we all bear. End of life is inevitable. Death may be a sad outcome, but it doesn’t have to be a bad one. 

John G. Carney is the president and CEO of the Center for Practical Bioethics. In 2008 he served as one of the co-authors in a Report to Congress on Advance Care Planning.

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Going for the Brass Ring

Last year, Joe Selby, MD, executive director of the Patient-Centered Outcomes Research Institute (PCORI), spoke to members of the NIH Interagency Pain Research Coordinating Committee (PCORI) to inform those of us on the committee about PCORI’s intentions to do more funding focused on chronic pain research. Dr. Selby said their interests were possibly in low back pain, migraine, musculoskeletal pain, and/or opioid abuse. I was elated. Then about a month ago (May 14, 2015), Dr. Selby posted a blog on the PCORI website titled, “Patient-Centered Research Can Improve Chronic Pain Care and Address Opioid Abuse.” 

I hope with all my heart that he is right; research or policy that can do both of these things is like grabbing the brass ring while on a merry-go-round. It is certainly a worthy goal but, to many, seems all but impossible. If anybody can do this, however, PCORI may have the best chance. Established by the Patient Protection/Affordable Care Act in 2010, PCORI’s mission is to “examine the relative health outcomes, clinical effectiveness, and appropriateness of different medical treatments” – particularly complex problems that threaten the health and well-being of all Americans. Chronic pain certainly meets that criterion.

In Dr. Selby’s blog, he said, “Since 2012, PCORI has built a sizeable portfolio of studies on chronic pain, two of which specifically address opioid treatment.” He went on to list some of the questions these studies have focused on:

  • How can we improve patients’ ability to communicate confidently with doctors about pain and pain medication?
  • What approaches to care delivery can minimize health and safety risks when long-term opioid use is considered?
  • What collaborative-care approaches to pain can improve quality of life, patient satisfaction, and adherence to other treatments?
  • How can we encourage patients to join and stay enrolled in integrative treatment plans that show promise of reducing chronic pain while lowering risk for opioid abuse?

He also informed readers that, in June, PCORI would be hosting “multi-stakeholder workshops” to discuss whether comparative effectiveness research (CER) can be helpful in addressing these issues. 

The week before Dr. Selby posted his blog, I was pleased to receive a letter from him inviting the Pain Action Alliance to Implement a National Strategy (PAINS) to send four representatives to two workshops in Washington, DC – one focused on low back pain and the other on long-term use of opioids in the treatment of pain. We quickly accepted, and on the morning of June 8, two members of the PAINS team and two of our Citizen/Leaders (people living with chronic pain and/or family members caring for chronic pain sufferers) went to the airport excited about traveling to our nation’s Capitol and participating in these important discussions. After six hours at the airport and our second plane cancellation due to mechanical problems in Kansas City and bad weather in DC, I emailed our PCORI contact to tell him that we would not be coming to DC, and we headed home with heavy hearts. 

The next day, I tried to participate in the opioid workshop remotely, but technical difficulties that even their “help desk” didn’t seem to be able to overcome, made it all but impossible for me to do so. I must say, however, that I am grateful to one of the meeting participants and the facilitator of the “opioid workshop” for their extraordinary efforts to include me. I am also grateful that the next day the PCORI facilitator sent me the rank-ordered questions that emerged from the workshop and gave me permission to share them. They are very interesting, and can be seen at:

That afternoon I wrote to Dr. Selby to express our gratitude for PCORI’s interest in chronic pain and to explain to him why PAINS representatives were not at the workshops the day before. I said that it is our view that, “PCORI is essential to the ‘cultural transformation in the way pain is perceived, judged and treated’ called for in the IOM report, Relieving Pain in America, and echoed in the forthcoming National Pain Strategy Report.” I also invited him and/or others at PCORI who he would deem appropriate to visit Kansas City to meet with our team and PAINS’ Citizen/Leaders. I told him that our Citizen/Leader Group has met with and advised us for more than two years and that they have been enormously helpful. I encouraged him to activate the following link (and click the link there to the video, “The Faces of Pain”), so that he could meet some of these outstanding individuals:

I also suggested that these remarkable people and others like them could be very helpful to PCORI, in fact, I believe, essential, as they build out their pain portfolio. I also offered to arrange for us to come to DC if it was not possible for them to come to Kansas City.

The ambitious goal PCORI has set -- comparative effectiveness research that will improve chronic pain care and address opioid abuse -- will require the involvement of many stakeholders. The most important among those may well be people who struggle to live with chronic pain and family members who care for them day-after-day. PCORI’s very name implies that they understand that. I look forward to hearing from Dr. Selby and welcoming him and others to Kansas City. In the meantime, I can almost hear the calliope music on the merry-go-round.

By Myra J. Christopher

Myra J. Christopher is the Kathleen M. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics and Director of PAINS.

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The Ethics of Resuscitation

A Brief History and Center for Practical Bioethics’ Efforts to Improve CPR Outcomes

Promise and Problems

Cardio-pulmonary resuscitation has offered food-for-thought for philosophers and bioethicists from its beginning, and the Center for Practical Bioethics has a long history of grappling with this subject.

In 1966, the National Academy of Sciences reported that closed chest cardio-massage and CPR should be ordinary treatments for hospitalized patients. Before that, CPR was a “hit-and-miss” proposition. Through the 1970s and 80s, the use of CPR became more prominent in hospitals, and CPR expanded to include defibrillation. In 1984, the year the Center was incorporated, Johns Hopkins Hospital became the first to incorporate automated external defibrillators (AEDs) into resuscitation efforts.

CPR was original intended for those who experienced cardiovascular arrests that were witnessed (i.e., those who died of a heart attack observed by someone with CPR skills). By the late 1980s and early 90s, it was being applied to all those who died in hospitals – and raising questions. One writer referred to it as “medical creep.” Another said, “Resurrecting the dead became medicine’s obsession.” Another referred to death itself as a “recurrent problem.”

DNR Orders

The Center for Practical Bioethics and others imagined that issuing do not resuscitate (DNR) orders would protect patients, who had little to no chance of benefiting from CPR, from the harms that can result when CPR is used inappropriately. Typical among these harms are broken ribs, burned skin, massive bruising, and being caught between life and death with little “quality of life.” Ron Stevens, MD, then head of Oncology at the University of Kansas, said that CPR was the “least aesthetically pleasing intervention done in medicine.” Another physician, one of the Center for Practical Bioethics’ “near founders,” Bill Bartholome, MD, wrote an article for the Annals of Internal Medicine in 1988 in which he said, “What is needed is a new perspective, a new way of thinking about Do Not Resuscitate Orders (DNR). We need to come to understand that in most tertiary medical centers and nursing homes the only predictably good candidates for the use of CPR’s techniques are staff and visitors.” 

For the most part, DNR orders were recognized in hospitals, but as, Medicare and state regulatory surveyors saw resuscitation as a quality measure, physicians were often hesitant to write such orders in particular for frail, elderly patients without capacity and/or when families were demanding that “everything possible be done.” And when patients who did have a DNR order left the hospital, there was no way for the DNR order to follow them home.

New Guidelines and Strategies

The Center for Practical Bioethics and others recognized that the near universal practice of attempting to resuscitate everyone who died in a hospital was ethically flawed and that questioning CPR in peer-reviewed journal articles and its efficacy at professional conferences was not enough to safeguard patients.  

In 1988, the Kansas City Regional Hospital Ethics Committee Consortium convened by the Center followed the lead of a community-based project in Hennepin County Minnesota that created a way for DNR orders to expand beyond the hospital settings. With our emergency medical service providers, local hospitals and nursing homes, Kansas City became the second community in the country where patients at home could have a DNR order that would be honored. The Kansas City initiative was featured in the Annals of Emergency Medicine.

The Consortium also created policy guidelines for DNR Orders in Nursing Homes and for Honoring DNR Orders During Invasive Procedures. The Spring 1998 issue of Bioethics Forum contains these Consortium guidelines. Because of this work, the Joint Commission (then JCAHO) sought the Center’s help in developing their standards.

POLST and Beyond

That same year the Center became aware of POLST (Physicians Orders for Life Sustaining Treatment) in Oregon, which expanded from unwanted and potentially harm treatments statewide. In 1999, the Center published a policy brief reporting Oregon’s initiative in Issue 3 of its publication, State Initiatives in End-of-Life Care. Implementing a POLST-like project in Kansas City has been challenging because our community straddles the state line. Today, the Center in concert with large healthcare-providing institutions leads a similar project called Transportable Physicians Orders for Patient Preferences (TPOPP). It is the first bi-state “POLST paradigm” initiative in the country. TPOPP educational materials and resources can be found at

The Center’s work in this area has long included inviting scholars from across the country to speak about their research and writing on this topic. On August 12, 2015, 7:00 pm, we will continue providing education and opportunity to learn from national scholars and one another when David Casarett, MD, presents the 21st Annual Rosemary Flanigan Lecture at St. Joseph Health Center in Kansas City, Missouri. Dr. Casarett is a tenured professor at the University of Pennsylvania Parelman School of Medicine and the author of Shocked: Adventures in Reviving the Recently Dead, a complete history of CPR.

By Myra Christopher and Rosemary Flanigan, PhD

21st Annual Rosemary Flanigan Lecture

SHOCKED: Adventures in Bringing Back the Recently Dead

August 12, 2015
Reception 6:00 pm
Lecture 7:00 pm
St. Joseph Medical Center
Alex George Auditorium, Building D
1000 Carondelet Drive, Kansas City, MO

David Casarett, MD, associate professor of medicine at the University of Pennsylvania, will explore the history, science and moral hazards of reviving the “recently dead.”

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A Right to Be Shocked?

Back in the 18th century, concerned citizens were experimenting with ways to bring back the dead. But they didn’t make a lot of progress. Indeed, the 19th century was not a particularly productive one for the science of resuscitation, and the first part of the 20th century wasn’t much better.

Fortunately, though, there were other important advances during that period, including many new discoveries and inventions. There was the airplane, of course (1903), and the ballpoint pen (1935), and let’s not forget the machine that makes sliced bread (1927), as well as the first Rock & Roll song (1951). That, by the way, is widely believed to be “Rocket 88”, by Jackie Brenston and his Delta Cats, which beats the heck out of Schubert or Chopin, if you ask me.

But if you were a cardiac arrest victim who was “apparently dead” in 1951, your chances of survival probably weren’t much better than they would have been 100 years before. On the bright side, if you were lucky enough rejoin the living in 1951, you’d be able to wake up to the world’s first Rock and Roll song.

Things Have Changed

In the last 50 years, things have changed. A lot. Now resuscitation is no longer the province of medical professionals. Anyone can resuscitate anyone. Moreover, it’s a revolution that we’re all part of, whether we know it or not. If you have two arms, and a sense of rhythm, you can perform CPR.

That’s not such a bad thing. Certainly the science of resuscitation has improved, and CPR does save lives. So encouraging bystanders to try their hand at bringing back the dead seems reasonable.

On the other hand, a try at resuscitation seems to have become mandatory. It’s the new default. Unless you happen to have an “out of hospital” Do Not Resuscitate (DNR) order, or a highly visible bracelet (or a tattoo), if your heart stops there’s a good chance that someone is going to feel compelled “to do…. something!”

That’s a little worrisome. I’m thinking of the court case that resulted from the death of Mary Ann Verdugo, who died in a Target store in 2008. Her family brought a lawsuit against Target because, they said, the store did not have an Automatic External Defibrillator (AED) available to its customers. That case is making its way slowly through the courts. In the most recent development, the California Supreme Court found in favor of the store, saying that it didn’t have a duty to provide defibrillators. The case isn’t over, though. Now it goes to the 9th Federal Circuit Court.

Crowdsourcing Resurrection

Regardless of how that suit is decided, it’s going to have interesting implications for the ongoing revolution in crowdsourcing resurrection. It also will raise many questions that we’ll need to think through very carefully.

Do we all have an obligation to try to bring someone back from the dead?  Should we assume that person lying on the floor wants us to try? How much evidence to the contrary do we need in order to decide that resurrection shouldn’t be an option?

These are difficult - and perhaps impossible - questions for the paramedics, doctors and nurses in medical settings who wrestle with them every day. And that’s concerning, because now we’re asking everyone to make those decisions. Bystanders, resident service directors and even gardeners will need to start thinking about whether and when resurrection is appropriate, necessary and the right thing to do.

These difficult questions are multiplying, as the revolution in crowdsourcing resurrection is speeding up. It took 200 years to get the hang of CPR. Now we have defibrillators that are proliferating in malls and airplanes and bus stations. And there are more developments on the horizon.

Sure, we’ll get better at bringing back the dead. That’s good news for people who can rejoin the living, and especially for those who want to. But as the tools of crowdsourcing are increasingly available, we need to figure out whether and how to use them.

By David Casarett, MD

Dr. Casarett, a researcher and tenured professor at the University of Pennsylvania Perelman School of Medicine, will present the 21st Annual Rosemary Flanigan Lecture on August 12, 2015.

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How was Henrietta Harmed?

The HeLa Legacy

I recently had the pleasure of meeting two of Henrietta Lacks’ descendants when I participated in a panel discussion with her granddaughter Kimberly Lacks and her great-granddaughter Veronica Spencer at Metropolitan Community College, Longview’s Spring Convocation on April 16th, 2015. The story of Henrietta Lacks was chronicled in the best-selling book The Immortal Life of Henrietta Lacks by Rebecca Skloot. This African-American woman, who died in 1951, is the source of the famous HeLa cells. These cells, obtained from a biopsy of Henrietta’s cancerous cervix, are unique; they are immortal in the sense that they have been growing in tissue culture since they were removed from her body in 1951 by doctors at Johns Hopkins Hospital.

Henrietta and her HeLa cells have a complex legacy. Although the cells were taken without Henrietta’s truly informed consent, they have been used in medical research to make important scientific advances ranging from the development of the polio vaccine to new drugs to treat HIV and cancer. Despite this incredible contribution to medicine, her role as the source of these cells has been obscured until recently. (In medical school, I first learned of these remarkable cells as ‘Helen Lane’ cells.) Neither she nor her family or descendants received any monetary compensation, although pharmaceutical companies have profited enormously from drugs developed using her cells. And, in a striking irony, many of her descendants lacked health insurance to provide access to the very medical treatments that HeLa cells had enabled.

Despite these facts, I was once asked by a bioethicist the following question: How exactly was Henrietta Lacks harmed? After all, would it not be the case, even today, that patients undergoing surgery for cancer would give tacit or formal written consent for their doctors, or researchers associated with their doctors, to use tissue obtained from surgery for medical research, and expect no formal recognition or financial compensation?

Direct and Indirect Harm

I believe Henrietta was harmed. She was directly harmed because she was not fully informed of the risks and benefits of undergoing particular medical treatments for her cancer and participating in research. Admittedly, the standards of informed consent and, in particular, consent for research participation have changed dramatically since 1951. However, there has always been a universal medical ethic to be truthful, and to hold the patient's best interest as the primary responsibility of the physician. These are two critical elements of the concepts that have now come to be named as autonomy and respect for personhood. The obligation to be truthful and to inform patients about the risks and benefits of their medical treatments were firmly enshrined in medical ethics even back in the 1950’s. The failure to live up to these responsibilities was partly responsible for the physical pain and suffering that Henrietta Lacks endured.

Henrietta was also indirectly harmed through the impact her treatment has had on her family and descendants. Like many others who live marginalized lives in marginalized communities—as surely was the case in the 1950’s in segregated city of Baltimore and arguably remains the case even today—they do not have faith in the integrity of the medical institutions that are supposed to serve them.  From personal communication with the family, I know that absence of trustworthiness manifested by Johns Hopkins in their treatment of Henrietta continues to influence the current attitudes of her descendants toward medical care in their community. This is an ongoing harm. 

Making Amends

What might Johns Hopkins and the medical establishment do to make amends to the descendants of Henrietta Lacks? One important step has been taken recently. The National Institutes of Health (NIH) announced an agreement with the Lacks family to protect their personal privacy and give them a say in how some research using HeLa cells is conducted. Specifically, the genome data of the Lacks family, which was revealed when the HeLa cell genome was decoded, will be accessible only to those who apply for and obtain permission from a committee of the NIH that includes members of the Lacks family.

Furthermore, the investigators must acknowledge the contribution of the Lacks family in their publications and presentations of their research data. However, the NIH agreement does not include a financial compensation for the family. 

Johns Hopkins, an elite and powerful institution, could also make an overt commitment of resources to create and advance programs that promote better access to care for poor and marginalized groups in Baltimore. The institution should work to identify and repair factors at work in the community that adversely affect health. Furthermore, it should explicitly identify these programs as a form of compensation, or reparations, for past ethical breeches that contributed to these problems. This should be undertaken in the name of Henrietta Lacks in recognition of both her extraordinary contribution to science and medicine and her family’s remarkable commitment to the continued use of her cells for the betterment of humanity.

The Henrietta Lacks story teaches us many things. One important lesson is that it is never too late to acknowledge and to make amends in the present for the great wrongs that have been committed in the past.

Written by Richard Payne, M.D.

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