Conversations in Bioethics

All lives come to an end. How do we prepare ourselves and our loved ones for the close of life?

The global population is aging at an unprecedented rate. What changes does the medical community need to support the effects on the healthcare system of increased longevity and greater numbers of people facing death? How do we ensure that our families and other private caregivers and healthcare professionals are prepared to provide quality, patient-centered care? What is dying like? What does it mean to care well for someone facing the close of life? How does society prepare to support those at the end of life?

In times of acute health crises, family members and those closest to us may need to make a myriad of health decisions with us or on our behalf if we are unable to make those decisions. They will also need to care for us and to live with us as we die. Sometimes death is sudden and other times it may mean a slow decline over months or years. How do we ensure that we and our loved ones are as ready as possible? How can we make sure that our wishes are known to those making decisions? How can the healthcare community and society support both professional and personal caregivers?

The event was held in Gaston Hall at 7pm, preceded by an opening reception beginning at 6pm in Riggs Library

This year’s panelists include:

– Eduardo Bruera, MD, FAAHPM – Professor of Medicine, University of Texas MD Anderson Cancer Center in Houston – a palliative care physician, is Department Chair and Professor of Medicine in the  Department of Palliative, Rehabilitation and Integrative Medicine, Division of Cancer Medicine

– Perry Ann Reed, MBA, MS, FACHE – Executive Director, WakeMed Children’s Hospital – healthcare manager and clinical ethicist, is Executive Director, at WakeMed Children’s Hospital, Raleigh, North Carolina

– John Duberstein, J.D. – widower of poet and writer Nina Riggs, author of the bestselling book The Bright Hour: A Memoir of Living and Dying (2017, Simon and Schuster). Mr. Duberstein and Ms. Riggs are the parents of two young sons; they were married almost 17 years. Ms. Riggs lived with metastatic triple negative breast cancer for two years before her death at age 39.

The discussion was moderated by Daniel Sulmasy, M.D., Ph.D., Senior Research Scholar and at the time the Acting Director of the Kennedy Institute of Ethics, André Hellegers Professor of Biomedical Ethics.

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For those interested in learning more about this topic or our incredible panelists, our esteemed Bioethics Research Library has curated this list of additional materials.

We willingly share data about ourselves all the time.

Consider the amount of data you share intentionally in the course of one day: on social media, on convenience apps, on ride-hailing services. What happens to all that data? We are coming to understand that it paints a picture of individuals, communities and our world that is permanent, accessible, and can be shared, sold, manipulated, and combined for purposes far beyond the intentions behind our original “disclosures.” Do we care; should we?

We also unwillingly share data every day.

What happens to the record of that shared ride you took? Who is aware of your internet search history? Your purchases? Your income from your part time job? Your recent arrest on a minor charge? What should governments, parents, employers, be able to learn about you? Does your employer read your emails? Should they?

On February 1, 2018, we convened a conversation at Georgetown about the rapidly-changing landscape of data ethics.

This year’s panelists included:

Chuck Todd, NBC News Political Director and moderator of “Meet the Press”

Cathy O’Neil, data scientist and mathematician, author of New York Time’s best seller “Weapons of Math Destruction: How Big Data Increases Inequality and Threatens Democracy”

Rick Smolan, photographer, CEO of Against All Odds Productions, and New York Times best-selling author

Mayra Buvinic, Senior Fellow, Data2X, United Nations Foundation

More about the panelists

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What is a disability, anyway?

In an era of ever-growing pharmaceutical enhancement, what counts as intellectually disabled, and why would that matter? How does the way we define disability (and normalcy) impact the just distribution of resources in society — and the way society treats those who happen to fall outside the norm? How are foundational concepts in ethics like dignity or autonomy complicated by reflection on the many ways we are dependent on others in the course of any “normal” human lifespan?

On February 2, 2017, we convened a campus-wide conversation on disability.

A full gallery of student work drawn from multiple Georgetown classes preceded a panel discussion in historic Gaston Hall at which no fewer than six expert panelists reflected on their personal, professional, and theoretical intersections with the topic of disability.

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More about the Panelists

This year, we focused on the many ways that families can be built in an age of assisted reproductive technology, anonymous sperm donation, increasing acceptance of same-sex relationships, surrogate pregnancy and more. Questions of justice and law arise in relation to some of our most intimate human relationships—and notions of personal identity.

On February 4th, 2016, we convened a conversation about ethics and family-building.

The conversation drew an audience from across the Georgetown campus and the broader DC bioethics community. Physicians and lawyers, chaplains and businesspeople, many whose lives bear the mark of personal experience with medical error, all came to celebrate a semester of student work on the topic of medical error and to engage in a spirited conversation with patient safety experts that delved deeply into its many moral complexities.

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About the Panelists

MARY L. BONAUTO, JD

A MacArthur Fellow and Civil Rights Project Director of Gay & Lesbian Advocates & Defenders (GLAD), Ms. Bonauto was one of three attorneys who argued in front of the U.S. Supreme Court that state bans on same-sex marriage were unconstitutional—an argument confirmed by the Court’s 2015 Obergefell v. Hodges decision.

SUSAN CROCKIN, JD

Ms. Crockin started one of the first Assisted Reproductive Technologies (ART) legal practices in the US in 1988, and continues to represent and consult to in-vitro fertilization (IVF) and third party ART programs, donor banks, and individuals around the country. She holds appointments at Georgetown’s O’Neill Institute for National & Global Health Law and Kennedy Institute of Ethics.

BARRY STEVENS

An award-winning documentary filmmaker and screenwriter who chronicled his search for his own sperm donor in two documentaries, Offspring and Bio-Dad, Mr. Stevens discovered that he likely is one of perhaps 600 offspring of a fertility researcher, who ran a London-based fertility clinic from the 1940s to the 1960s.

BREE (BREEANNA) SPEICHER & HILIT JACOBSON

Donor siblings whose search for their sperm donor was documented in a docu-series on MTV in late 2013 called Generation Cryo, Bree and Hilit found each other — through Bree’s investigation and modern donor identification details —and ultimately discovered at least fifteen half-siblings around the country.

Our genes are an essential part of the story of who we are, and will become.

What that story means, how sure we may be of its details, how much of it we want to hear and how much we may want others to know of it—these are part of the Pandora’s box of questions unleashed by the rapid advance of personal genetic technology.

The emotional consequences of genetic testing are hard to predict.

Information about deep ancestry, as well as current medical information and predictions, is increasingly available on the basis of individual genome sequencing: but it’s not always easy to predict how receiving surprising information about your heritage, your future health prospects, or other aspects of your personality and identity will strike you — or your family members.

The potential for genetic discrimination is real.

Familiar with the 1997 film Gattaca? In a dystopian future social, the publicity of genetic information and widespread use of eugenic reproductive technology leads to shocking social stratification, with everything from employment to romantic partnership shaped by one’s genetic inheritance. Even now, ethicists worry at moves made by employers and insurance companies on the basis of genetic or other medical information — and how that might play out as personal genomics continues to expand.

On February 3rd, 2015, we convened a conversation about ethics and personal genomics.

The conversation drew an audience from across the Georgetown campus and the broader DC bioethics community, coming together to celebrate a semester of student work on the topic of personal genomics and to engage in a spirited conversation with genetic experts that dives deep into its many moral complexities.

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About the Panelists

JOANNA RUDNICK, MA Joanna Rudnick is an Emmy-nominated documentary filmmaker living in the Bay Area. Her directorial debut In the Family told her very personal story about coming to terms with learning that she had the BRCA1 gene that greatly increases each woman’s risk for breast and ovarian cancer. Since its national broadcast on PBS in 2008, In the Family has been broadcast in at least 10 other countries around the world. The film was screened as part of the successful effort to pass the Genetic Information Nondiscrimination Act (2008). It also served as a public educational resource to raise general awareness about the dangers of the gene patenting and secrecy around sequencing results, especially for the BRCA1 and BRCA2 genetic mutation data still controlled by Myriad Genetics. Her own personal story has led Ms. Rudnick to serve as a member-advocate for the “Free the Data” movement, a grassroots coalition made up of policy makers, advocacy organizations, academic centers, individuals, and industry partners, who actively advocate and actually share their genetic information to help scientists and researchers overcome the information gap about genetic sequences. The goal being to move toward an understanding of the risks associated with genetic mutations and how and why particular genetic mutations can cause hereditary breast and ovarian cancer. Pooling data and making it available also is expected to help elucidate the consequence of other genetic variants of unknown significance.

JAMES H. FALLON, PHD James Fallon is a brain researcher. He is Professor Emeritus, Anatomy & Neurobiology and Professor, Psychiatry & Human Behavior at the University of California, Irvine’s School of Medicine. His research work explores the way genetic and in-utero environmental factors affect the way the human brain gets built and then seeks to understand how an individual’s particular experience and environmental exposure further shapes and changes his/her brain development. This work focuses on neurobiology, neuroanatomy, and epigenetics, “carefully orchestrated chemical reactions that activate and deactivate parts of the genome at strategic times and in specific locations on the genome” as a result of environmental factors such as stress, diet, toxins, and behaviors. Some of Dr. Fallon’s research work contributed to understanding aspects of diseases such as Alzheimer’s, Parkinson’s, and schizophrenia, and conditions such as nicotine and cocaine additions and psychopathic personality. He has also done research on the basic brain biology on topics such as the neurotransmitters dopamine and norepinephrine. He was the first to show the mass mobilization of adult stem cells in models of chronic stroke and Parkinson’s disease, and the postnatal expansion of neurons in human neocortex. His book, The Psychopath Inside: A Neuroscientist’s Personal Journey into the Dark Side of the Brain (2013), tells his personal experience but also points out that work on epigenetics and in the new field of imaging genetics may result in better understanding and better treatment of all sorts of behaviors, but it may also raise troubling ethical issues.

SPENCER WELLS, PHD Spencer Wells is an Explorer-in-Residence at the National Geographic Society. He leads The Genographic Project, which is collecting and analyzing hundreds of thousands of DNA samples from people around the world in order to decipher how our ancestors populated the planet. A collaborative effort of scientists around the world, the Genographic Project will also capture a genetic snapshot of humanity before it is erased by modern-day influences. The Project combines Well’s two great passions, biology and history, and builds on his earlier work gathering DNA around the globe as featured in his award-winning book and documentary television program, The Journey of Man: A Genetic Odyssey. Wells’ landmark research findings based on early field work surveying Asia and former Soviet Republics in the late 1990s led to advances in understanding of the male Y chromosome and its role in allowing scientists to trace ancient human migration patterns. In addition to his global DNA research work, Wells also has served as director of the Population Genetics Research Group of the Wellcome Trust Centre for Human Genetics at Oxford University and as head of research for a Massachusetts-based biotechnology company.

Preventable medical error is a leading cause of death in the US today.

In fact, current estimates place the number of lives lost to medical error at between 210,000 and more than 400,000 a year in the US alone. That would make it the third-largest killer in the US, just behind heart disease and cancer.

Medical error is common but often preventable.

As physician Atul Gawande has pointed out, quality control systems common to other industries—from aviation to the restaurant industry—have evaded the medical profession. Patients and providers alike often suffer from institutional and structural forces that increase the incidence of error, even when those within the system act with the greatest integrity, skill, and good intentions.

“I’m sorry” is an uncommon phrase.

There are many reasons why medical apologies are rare. Physicians feel ashamed and scared. They are often told to stay silent by medical lawyers trying to protect against liability risk. And they aren’t taught how to apologize, which is especially hard to do when the people you hurt are the people you meant to help. Doctors are trained in many skills, like how to intubate a patient or how to calibrate medication dosing—but they are not trained in how to apologize.

This is a problem.

Because if anything is certain in medicine, it is this: Every doctor will make mistakes that end up harming someone. Not because they are incompetent or don’t care, but because they are caring for so many. Even the best doctors, like the best cab drivers, will cause an accident some day, for the simple reason that they are out there day after day, logging mile after mile, and humans aren’t perfect.

On February 6th, 2014, we convened a conversation about medical error.

The conversation drew an audience from across the Georgetown campus and the broader DC bioethics community. Physicians and lawyers, chaplains and businesspeople, many whose lives bear the mark of personal experience with medical error, all came to celebrate a semester of student work on the topic of medical error and to engage in a spirited conversation with patient safety experts that delved deeply into its many moral complexities.

View the recording

About the Panelists

JOHN T. JAMES, PHD Dr. James is former chief toxicologist at NASA, where he received numerous awards and wrote many book chapters and monographs on spaceflight safety. As a result of the loss of his oldest son to medical errors in 2002, he became a prominent patient safety activist: publishing a book in 2007 about his son’s unfortunate care, A Sea of Broken Hearts, and proposing a national patient bill of rights to empower and protect patients. In 2008, he founded Patient Safety America, which is dedicated to the cause of patient safety awareness. He recently published an evidence-based, peer-reviewed study in the Journal of Patient Safety in which he estimated that 440,000 Americans have their lives significantly shortened by preventable adverse events in hospitals. His new book, The Truth about Big Medicine: Righting the Wrongs for Better Healthcare, is set to be published later this year.

BRIAN GOLDMAN, MD Dr. Goldman is an emergency physician, author of best-seller The Night Shift, and host of the CBC’s “White Coat, Black Art,” a weekly radio show that takes listeners behind the scenes of hospitals and doctor’s offices. He discusses health care topics ranging from queue-jumping to confronting medical errors and dealing with them—and is not afraid to use his own medical mistakes as examples for how doctors might improve. Dr. Goldman has worked as a health reporter for The National, CBC Television’s flagship news program, for CBC-TV’s The Health Show, and as senior production executive during the launch year of Discovery Health Channel, Canada’s only 24-hour channel devoted to health programming. Dr. Goldman has been a respected emergency physician at Mt. Sinai Hospital in Toronto for more than 20 years. His new book The Secret Language of Doctors—about medical slang and the medical culture from which it arises—will be published later this year.

BETH DALEY ULLEM, MBA Ms. Ullem is a prominent advocate for improving the quality of medical care in the US. Following her infant son’s death in 2003, Beth began work on initiatives aimed at reducing preventable hospital errors and improving the transparency of clinical outcomes. She works with hospital leadership teams, hospital boards and healthcare industry leaders to develop and fund programs that reduce risk and improve the quality of patient care in hospital environments, including Harvard Medical School’s Institute of Professionalism of Ethical Practice (IPEP), Northwestern Memorial Hospital, the Center for Medical Simulation, and other leading healthcare institutions. Ms. Ullem is passionate about reducing harm and errors, improving health care transparency, and enabling hospital boards to understand and lead on quality issues.