Monday, December 11, 2017

Ethics, Morality and Genomic Science: Can We Play God the Way God Plays God?

Richard Payne, MD
The wisdom of humans tinkering with nature has been challenged throughout the ages based on a common storyline: humans unwisely tamper with nature with disastrous consequences for the creator when we cross a line previously reserved for the deity. Three decades ago, in the early days of gene engineering, scientists raised ethical and moral concerns about “playing God.” They weren’t opposed to interrupting the natural order to cross breed animals and plants or to cure or treat disease. Rather, they warned against exercising the power of science and technology without sufficient regard for its consequences, admonishing not to cross boundaries that manipulated nature in ways traditionally thought only an omniscient and benevolent God could or should do. 

Recently, a new study reported that defective genes in an embryo were edited and repaired through a revolutionary technique known as CRISPR-Cas9. The procedure was used to eliminate hypertrophic cardiomyopathy – a devastating heart disease and the most common cause of death in otherwise healthy young athletes. Use of this technology is under intense scrutiny by scientists and ethicists to understand its risks and benefits. Moral, ethical and practical concerns are particularly strong as applied to genetic engineering of sperm and egg cells, because such “germline” editing not only affects the individual embryo, but also future generations.

So, does germline gene editing “cross the line?” There are strong arguments in support of the wise use of CRISPR-Cas9 technologies in medicine. Obvious examples relate to eliminating types of cancer, cardiovascular and neurological diseases by selective editing  genes of embryos with identifiable mutations that cause these disorders. The study reporting correction of the cardiomyopathy mutation specifically targeted the abnormal gene, indicating that the technology is becoming more precise and safer in a remarkably short period of time. This is why the National Academy of Sciences, Engineering and Medicine and the FDA have ethics guidelines permitting research on germline editing and engineering. The ethical principles behind these safeguards include the notion that genomic editing technologies will be used by appropriately trained scientists in transparent processes to promote well-being for all humans.

However, there are concerns we should not ignore. Germline editing requires monitoring of future generations of the embryo’s offspring, which raises a host of practical, legal and regulatory issues currently unaddressed. Furthermore, use of gene editing to enhance human characteristics such as physical appearance and cognitive performance is less ethically justifiable and subject to potential abuse. Despite these concerns, many prominent scientists warn that halting research and potential medical applications for fear of unknown risks and unaddressed ethical questions is also risky, and poses problems by not addressing current moral concerns—such as application of these technologies to reduce the number of abortions and loss of embryos.

The late theologian-ethicists Paul Ramsey and Alan Verhey raised the possibility that “playing God” may not always be negative, with one qualification. They wrote that humans should only “play God, the way God plays God.” By that they meant that it is morally appropriate for humans to research and explore the natural world and to wisely use wonders such as CRISPR-Cas9 because God made humans in his image and made us stewards of creation. We humans “can play God the way God plays God,” they argue, if we intend and promote human flourishing through our scientific and medical discoveries and technologies, and if we make these advances available to all humankind by seriously attending to social justice and fairness. This is truly wise counsel and worthy of application as we inevitably push forward on our revolutionary genomic journey. It also may be much more challenging than the science.


Richard Payne, MD, is the John B. Francis Chair at the Center for Practical Bioethics, Kansas City, MO, and the Esther Colliflower Professor of Medicine and Divinity (Emeritus) at Duke University.

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Thursday, October 12, 2017

Gun Violence: Prevention by Paying Attention

Tarris Rosell, DMin, PhD
In a time of heightened anxiety about gun ownership and gun violence, the theme of this blog may already have some “Second Amendment People” reaching for their Glocks in self-defense. Or those impassioned for increased regulation of gun sales and ownership may be anticipating a welcome shot in the arm of support for that cause, especially in the wake of “Las Vegas”— the newest city whose name now depicts a national tragedy.

While I am unafraid to take on proponents of unfettered gun ownership and, as a life-long gun owner myself, I still remain an ardent proponent of tougher laws restricting access and distribution of firearms, this is not the tack I am taking here. The moral of this message is that we ought to pay attention as an ethically astute means of community care and also gun violence prevention.

To what or whom should attention be paid?

Lessons from Sandy Hook


I attended a community forum on October 9, 2017, organized by the Heartland Coalition Against Gun Violence, a program of Grandparents Against Gun Violence, and with co-sponsors that included the Center for Practical Bioethics. Plenary speaker Nicole Hockley urged us to pay attention to signs of a potential shooter. She claims that most incidents of gun violence are preventable, not so much by reducing the number of weapons (although she is not opposed to such efforts), but by identifying those whose trajectory of emotional-relational distress seems headed towards an act of violence, most often involving self-harm.

As the Public Service Announcement recently released by Hockley’s organization compellingly demonstrates, interventions can happen only if we are paying attention to those lurking in a lonely background. The 2½ minute YouTube video, “Evan,” is a must see and show for teachers, clergy, parents and other community leaders (https://www.youtube.com/watch?v=A8syQeFtBKc).

Ms. Hockley is the mother of Dylan, one of 20 young children killed by 20-year old Adam Lanza at Sandy Hook Elementary School on December 14, 2012. She and some other bereaved parents have put their mourning to work in a nonprofit called Sandy Hook Promise (www.sandyhookpromise.org). Hockley speaks to groups like the one in Kansas City about prevention by paying attention. She trains listeners to “recognize the signs of chronic social isolation or marginalization or rejection and how to practice inclusivity, which is step one onto a different pathway or not going down one towards self-harm.”

The parents of Sandy Hook victims teach that “Gun violence is preventable when you know the signs. Learn them now.”

Warning Signs and Things You Can Do Today


The warning signs they point to include the following:

  • a strong fascination or obsession with firearms, shooting techniques and mass shootings
  • overreacting or acting out aggressively for seemingly minor reasons
  • real or perceived feelings of being bullied
  • unsupervised, illegal or easy access to firearms and bragging about such access
  • gestures of violence and low commitment or aspirations towards work or school, or a sudden change in academic or work performance

It is natural to feel demoralized after yet another mass shooting such as we saw in Las Vegas, with 59 dead and nearly 500 injured. Yet there is hope. Nicole Hockley encourages all of us to “know that gun violence is preventable, and . . . if you’re frustrated by the lack of progress on this from a legislative perspective, just don’t give up, because there are things you can do today that can protect your own children and your own community if you promise to learn how.” (See http://people.com/crime/a-list-of-warning-signs-to-prevent-school-shootings-released-by-anti-gun-violence-nonprofit-sandy-hook-promise/)

Dr. Rosell is the Rosemary Flanigan Chair at the Center for Practical Bioethics. He is also Professor of Pastoral Theology at Central Baptist Theological Seminary, Clinical Professor, History and Philosophy of Medicine at the University of Kansas Medical Center, School of Medicine, and Chair of the Department of Bioethics at Kansas City University of Medicine and Biosciences.

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Wednesday, September 6, 2017

Lifetime Achievement in Bioethics

Center for Practical Bioethics Founding Executive Myra Christopher Honored by American Society for Bioethics and Humanities 

Forty years ago, a young Johnson County, Kansas, homemaker stood by her mother’s grave and promised to spend the rest of her life working to ensure that those living with serious illness could have their wishes honored and values respected. That same year, her college philosophy professor introduced her to a new “movement” called bioethics that advocated for patients to actively engage in their own care. Following graduation, from 1984 through 2011, she served as founding executive director of the Center for Practical Bioethics in Kansas City.

On October 20, 2017, Myra Christopher’s four-decade journey will culminate in her acceptance of the 2017 Lifetime Achievement Award from the 1,800-member American Society for Bioethics and Humanities (ASBH) at the national association’s conference hosted in Kansas City.

Early in Christopher’s career at the Center for Practical Bioethics, she and her founding board faced challenges like court reporters, judges and lawyers appearing in hospital rooms to intervene on end-of-life decisions. Hospice care was, for the most part, still rare.

Unlike the half dozen academia-based bioethics centers that existed at the time, the vision for the Center was to create an independent, free-standing nonprofit that converts bioethics theory into services and resources to serve real patients, families, providers and policymakers facing real-life healthcare issues and crises in real time.

In recognition of Christopher’s role in achieving this vision, ASBH professionals from clinical and academic settings along with those from medical humanities throughout the country will present her with its most prestigious honor in afternoon ceremonies at the Sheraton Crown Center Hotel in Kansas City, Missouri.

Christopher, who credits her success to early believers and supporters, will be honored along with Steven Miles, MD, who is recognized for his contribution to bioethics scholarship and devotion to the alleviation of suffering.

In announcing the award, ASBH stated: “Christopher’s work has changed how shared decision making among families helps to match the care a loved one receives with his or her wishes, how hospital ethics committees respect and advocate for the rights of patients, and how communities care for those with terminal illness.”

In response to the ASBH announcements, congratulations from national and local leaders in healthcare have poured in, as exemplified below:

Myra Christopher has long been a hero of mine. Her values and unwavering commitment to service represent a personal True North.

Ira Byock, MD, Founder & Chief Medical Officer
Providence Institute for Human Caring, Torrance, CA

Myra Christopher is part of a group of pioneering women – in which I include Dame Cicely Saunders, Florence Wald and Elisabeth Kubler-Ross – each of whom stood up, powerfully and strategically, on behalf of people who are suffering. Because of Myra, the beginnings of a transformation towards person-centered care has begun.

Diane Meier, MD, FACP, Director of the Center to Advance Palliative Care
Mount Sinai Health System, New York, NY

Myra Christopher’s contributions to improving care for patients at the end of life are emblematic of some of the best features of bioethics. Rather than simply engaging in research (which she also does), she has shown how commitment and intelligent action can lead to changes in policy and practice that actually improve the lives of patients.

David Magnus, PhD, Director of the Stanford Center for Biomedical Ethics
Stanford University, Palo Alto, CA

As we continue to wrestle with ongoing issues in bioethics (end-of-life care, protection of human subjects, pain management, etc.), as well as enter into new challenges in bioethics (new technologies, genomics, healthcare financing, etc.), we will all benefit from the legacy of your work and be better prepared to bring bioethics down to that “practical” level that you have so successfully advocated.

Betty Drees, MD, FACP, FACE, Professor of Medicine and Dean Emerita
University of Missouri-Kansas City School of Medicine, Kansas City, MO

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Friday, August 4, 2017

Whatever Happened to Long-Term Care Reform?

From the Trenches: A Prescription for Change

I have enjoyed looking at the pictures of protestors being arrested in our nation’s capital. I concur with many commentators who credit the civil disobedience of the protestors – many of whom are members of the disability rights activist group ADAPT – with the defeat of the Senate bill to abolish the Affordable Care Act. It’s also been fun because I know so many people in the photos.


The Affordable Care Act was a massive piece of legislation. The complexities and moving parts are best understood by people who have very closely followed or implemented the law. I generally think of the ACA as three things:


1. Reform of the private insurance market with the goal of providing greater access to insurance coverage;

2. Changes to Medicare, such as closing the prescription drug donut hole; and

3. Changes to Medicaid. 

Mike Oxford, Executive Director for Policy at the Topeka Independent Living Resource Center and a member of the national chapter of ADAPT, was one of many who protested against the Senate bill to repeal the Affordable Care Act.

Community Services Optional?


The Medicaid issue that has drawn the most attention is the matter of expanding access, appropriately called “Medicaid expansion.” But the law contains other Medicaid provisions as well. It provides incentives for states to continue to “re-balance” their systems of providing long-term care. “Re-balance” is often mentioned in quotation marks because states were never in balance. Nonetheless, through the ACA, states were provided additional federal matching funds if they would transfer more long-term care to community services and away from institutions, such as nursing homes.


That is the crux of the protest. People with disabilities and older adults do not want to return to the days of being sent to nursing homes as the only way to receive long-term care. The right to live in the community is worth a fight, and even arrest. Under federal law, when a person needs long-term care paid for by Medicaid, federal law guarantees access to a nursing home. Both the House and Senate ACA repeal legislation would reform Medicaid by converting it to a block grant program. States would ultimately manage the entire cost of Medicaid and would come under increasing financial pressure to eliminate optional services. Community services are optional. As are some of the categories of people who receive Medicaid for nursing home care. The end-result of eliminating services and/or categories of people would drastically reshape provision of long-term care.



Voluntary Program Not Viable


We need a public debate about long-term care reform. The ACA was many things but long-term care reform is not among them. Not really. Not as the law has been implemented. This I know. I was squarely in the middle of the sole provision of the ACA that addressed long-term care. That part of the law – Title VIII known as the Community Living Assistance Services and Supports Act (CLASS) – didn’t work. It wasn’t implemented and was eventually repealed.


CLASS created a limited-benefit long-term care insurance program. Advocates for older adults and people with disabilities fought very hard to have CLASS included in the ACA. They had a large and active coalition comprised of individuals and organizations. The principle that unified the spectrum of aging and disability advocates was the goal of providing long-term care in community.


The program, as designed, would have allowed individuals to purchase modest long-term care insurance coverage, administered by the federal government. The benefits would not have been sufficient to cover all long-term care costs, but it would have provided modest financial assistance to help people remain in community as they age and/or live with disability. As designed, it had an insurance benefit equivalent to about one-third of private long-term care insurance.


It didn’t work because it was voluntary. The people for whom the program was designed would have been interested in enrolling. People who currently need long-term care or think they will need it are more likely to purchase limited-benefit coverage. Even with the five-year waiting period required by law, the program would have suffered severe adverse selection. Actuarially the program was not viable.



Worst Day of My Career


Part of the controversy of the ACA is the matter of mandating participation. Only if everyone participates will the risk be spread sufficiently to support affordable premiums. For the private market the ACA mandated enrollment. For CLASS it was voluntary. In this fundamental way, the federal law took opposite approaches to health insurance coverage and long-term care coverage. Because the CLASS program could not be solvent, the Obama administration notified Congress it would not implement that portion of the ACA. In response, the House Energy & Commerce Committee held a public hearing. A federal official had to appear before the committee to explain why the program wouldn’t work and why the administration was not moving forward. That official was me. I spent 18 months serving as the administrator of the CLASS program.


The most difficult thing I have had to do in my career is recommend we not implement the long-term care program that would have helped tens of thousands of people who need long-term assistance and support. My anguish in breaking this news to the stakeholders paled in comparison to their dashed hopes of federal support for this much-needed and hard-fought program. In the wake of our decision to halt implementation, Congress repealed the law.


Time to Start Over


It is time to start over. For stakeholders who focus on long-term care, myself included, the ACA was insufficient. It did not tackle the thorny issues that underlie how we pay for and deliver support to people who need assistance with basic functions such as eating, bathing, dressing, toileting, transferring and maintaining continence. The so-called activities of daily living. These are the elements of long-term care. Most of us will face one or more of these challenges in the future. When we need that type of help, each of us will face the cost. This type of assistance is not covered by Medicare. This type of assistance can be provided either at home or in a congregate setting. This type of assistance is exorbitant. For these multiple reasons, Medicaid is the single largest payer for long-term care. And Medicaid block grants are a threat.


The entitlement programs in this country are a tremendous drain on federal and state budgets. Financial and political pressures will continue to thrust us into the maelstrom of reform. As we tackle changes in the Medicaid program, it is essential we begin by looking at the people it serves. The highest costs in the program are in long-term care. The people driving those costs are older people and people with disabilities. The very people being arrested this past month. I know firsthand these vocal advocates welcome the opportunity to talk about reform. But the conversation they seek is not primarily about Medicaid expansion. They are demanding we confront long-term care.


Necessary Decoupling


They are right. In the national campaign to either repair or replace the ACA, it is fundamentally unfair to make sweeping changes to Medicaid long-term care policy without public debate. Let’s give long-term care the forum it deserves. Changing long-term care financing will require laser-like focus on that topic alone. It cannot be adequately reformed by polarized politics reaching for other parts of the law. Long-term care reform is needed. By itself. Alone. Stripped of the distraction of the rest of the law.


Until we decouple long-term care financing from ACA reform we will be under constant threat. Not from the activists willing to lay their bodies on the line. But from the threat of losing the program we may need as our bodies themselves fail. The people who understand this most are those people – my friends – in wheelchairs you are watching on the news.



Kathy Greenlee is the Vice President for Aging and Health Policy at the Center for Practical Bioethics. She previously served as the U.S. Assistant Secretary for Aging and Administrator of the Administration for Community Living from 2009 to 2016.



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