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Author Archive: Practical Bioethics

About Practical Bioethics


Privacy and Whole Genome Sequencing

-->Privacy is a big topic that’s getting bigger and more complicated every day. People increasingly accept that just about anyone can find information about them on the Internet. Indeed, millions make it easier by sharing details on social media.

With respect to health and healthcare, it’s thrilling to look forward to a time when cures are found and people who have banked their genetic code can be contacted to learn about and benefit from them.  

At the same time, many are concerned about potentially negative consequences of the availability of genetic information. What if, in the wrong hands, it could affect health insurance, employment, loans, a divorce or custody case, even the chance of finding a spouse – not only for the individual but other living and future relatives?

The Center for Practical Bioethics’ 2013 Fall Symposium, “Ethical Frontiers in the Brave New World of Genomics and Learning Health Systems” on November 8 will explore the ethical implications of whole genome sequencing in light of its rapid growth and importance to Learning Health Systems, where knowledge is drawn from every encounter, both research and clinical, yet policies regarding the handling of data differ substantially. 

The Presidential Commission and Beyond

The Presidential Commission for the Study of Bioethical Issues’ report submitted to President Obama in October 2012, “Privacy and Progress in Whole Genome Sequencing,” made recommendations in six areas:

·      Strong baseline protections while promoting data access and sharing
·      Data security and access to databases
·      Informed consent process
·      Facilitating progress in whole genome sequencing
·      Public benefit from medical advances that result from whole genome sequencing

“The Presidential Commission’s work and the Center’s Symposium,” said Alan Rubel, JD, PhD, “are first steps in the process of tailoring the apparatus we already have in place to deal with the problems inherent in whole genome sequencing.” Dr. Rubel served as an advisor to the Presidential Commission, an assistant professor at the University of Wisconsin School of Law, and will join the faculty at the Symposium.

Procedures to Drive Benefit & Minimize Risk

“The potential for people to benefit and suffer negative consequences from whole genome sequencing is substantial enough that we need to develop procedures to ensure that we derive the most benefit without jeopardizing people’s well being,” said Dr. Rubel. “How information is used isn’t always clear. There ought to be some way – some standard language – to convey what the possibilities are so that people donating material or having their genome sequenced can be said to properly consent. There are issues of data security as well.”

Dr. Rubel is a strong proponent of providing more and better information to the public about what whole genome sequencing can and cannot do. “Many conditions have to do with chronic and environmental disease that can be prevented by changes in lifestyle, independent of genomics, and may be better addressed without getting into genomics.”

He also believes that concerns about privacy often mask other worries that may be best understood as issues of justice. “If, for example, our worry is that genetic information being disclosed will harm our employment, it may be that the real problem is how vulnerable people are in terms of employment, and if we deal with that, the genetic issue goes away.”

About the Symposium

At this Symposium, you will:

·      Hear updates on progress in the brave new world of genetic science.
·      Gain insight into ethical issues around data collection, privacy and informed consent, especially as they apply to genomics and Learning Health Systems.
·      Explore what type of ethical framework is needed to advance research while protecting human subjects in Learning Health Systems.

Register now at For more information, contact Cindy Leyland at 816-979-1357 or

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How Future Doctors Think

How Future Doctors Think
Flanigan Lecture Explores How Medical Students Make Sense of Their World

 What kind of physician do you want? Do you want someone who, out of respect for your autonomy, explains treatment options but makes no recommendations, leaving the decision up to you? Or do you want something more?

If you want something more, the research conducted by Felicia Cohn, Ph.D., who presented the 19th Annual Rosemary Flanigan Lecture on July 30, 2013, underscores the importance of knowing how your doctor thinks and helping him or her to understand your story.

Patterns in Their Stories

When Dr. Cohn taught medical ethics at the University of California-Irvine School of Medicine, she noticed patterns in the stories medical students shared concerning conflicts they encountered between their personal values and professional obligations and what they did about them. Her colleague at UCI, Humanities Director Johanna Shapiro, wondered if there might be a way to analyze and identify themes from these stories as told in 299 papers Dr. Cohn had collected.

“The themes of the students’ narratives really did fall quite neatly into six categories,” said Dr. Cohn.

• Restitution (38%)  - Appealed to a moral norm or ethical principle.
• Compromise (16%) – Conceded core values.
• Journey (16%) – Grew through experience.
• Witnessing (13%) – Felt empathy but stood by and watched.
• Resistance (9%) – Rejected professional ethics in favor of personal views
• No Problem (2%) – Never experienced any conflict.

“I thought the papers would tell a lot more stories about witnessing and compromise, which were the type of stories that the students mostly shared in class,” said Dr. Cohn. “But it turned out that restitution – appeal to principle – was the most common story they told. And more often than not the principle the students appealed to was autonomy. In other words, it’s okay for me to do this because it’s what the patient said he wants.”

Autonomy or Guidance?

Dr. Cohn explained that this emphasis on autonomy in modern medical culture has important implications for both healthcare professionals and their patients.

“If physicians really think what a patient is doing is wrong but feel that respecting autonomy takes precedence, they’re going to be spending a lot of time doing things that they think are wrong. Then they’re miserable and we go and ask them to be nice to patients. I can’t help but think that’s where a lot of the dissatisfaction and even burnout from healthcare professionals comes from.”

Conversely, for the patient who wants more than options from their physician – who wants their physician to consider how their illness and treatment will integrate into their life and make honest recommendations based on that – then the doctor who tells a restitution story probably isn’t the doctor for them.

Learn more at

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A Primer on Learning Healthcare Systems

Healthcare systems and all who participate in them – providers, patients and administrators – have an obligation to pursue continuous quality improvement in order to quicken the pace of medical discovery, reduce harm to patients and improve the efficiency of care. To achieve these goals, traditional healthcare systems must transform into Learning Healthcare Systems that more seamlessly incorporate research into clinical care, continuously learn from daily patient-provider encounters, and use ever-expanding databases to inform patient assessment and treatment.

These activities raise thorny issues concerning the under and overprotection of human subjects, especially in healthcare settings where research has traditionally and formally been distinguished from treatment. Overprotective research ethics protocols can stall progress. Underprotection of human subjects exposes patients to significant risk without oversight.

The challenge faced by the LHS is to develop policies and procedures that maintain respect for human subjects and, at the same time, do not unnecessarily encumber the aggregation of data that allow investigations that lead to quality improvement.

The Center’s 30-year history in working with healthcare providers and consumers uniquely positions it to:

   · Develop consensus and common definitions as to what constitutes “low risk, low-burden” research that may not require intense oversight;

   · Raise public awareness of patient and provider responsibility to participate in research with great potential to improve quality; and

   · Implement a communications strategy to engage providers and patients in a dialogue that results in their mutual understanding of roles they play in improving health outcomes and quality.

The Center has always served as an honest broker and convener in contentious cutting-edge bioethics issues and regional health care initiatives and stands poised and ready to help communities meet the obligations of Learning Healthcare Systems.

Learn more at

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Medical Interpreters and Patient Communications

Medical interpreters help patients, doctors communicate Kirsti Marohn and Stephanie Dickrell USA Today December 9, 2012Health care regulations require medical providers who receive federal funding to provide interpreters. There's al...

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A Book on Pain 2013

A 2011 Report on Pain by the Institute of Medicine indicates some 100 million Americans suffer from chronic pain.Author Judy Foreman will publish a book on pain in 2013 and talks about it in this edition of The Bioethics Channel with Lorell LaBoub...

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Science/Spirituality/Good Mix?

David O. Wiebers

Washington Post

December 6, 2012

Throughout my scientific training and subsequent career, I found myself consistently gravitating not only to the science and medical sections of bookstores but also to the metaphysical, New Age, self-help and spiritual sections of such stores in search of answers to many of the ongoing mysteries of science and to many of life’s most profound and perplexing questions.

Link to Podcast: The Legacy of Father Kevin O'Rourke, Sister Rosemary Flanigan and Bill Colby, JD, The Bioethics Channel, May 9, 2012

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Medical interpreters

Medical interpreters help patients, doctors communicateKirsti Marohn and Stephanie Dickrell USA TodayDecember 9, 2012Link to Podcast: The Ethics of Cultural Competency, Michael Brannigan, PhD, The Bioethics Channel, May 4, 2012

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Death of Death Panels?

John Carney
President/CEO Center for Practical Bioethics
December 11, 2012

Death panels -- a term that certainly influenced the healthcare reform debate in 2009. Now we’re facing 2013 and implementation of the affordable care act,  will the term be resurrected? Or can we put a stake in it and say death panels are dead? 

John Carney of the Center for Practical Bioethics talks about it in this edition of The Bioethics Channel with Lorell LaBoube.

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Judy Citko, JD

POLST coalitions -- Physician Orders for Life Sustaining Treatment -- are developing  across the country. A conference on that subject was held in Kansas City November 16 2012 and one of the guests was Judy Citko, Executive Director, of the Coalition for Compassionate Care of California. In this edition of The Bioethics Channel with Lorell LaBoube Judy explains the progress of POLST and the promise of TPOPP.

Link: Care at the End of Life, Editorial, New York Times, November 24, 2012. Standard devices have been greatly improved in recent years by adding medical orders signed by a doctor — known as Physician Orders for Life Sustaining Treatment, or POLST — to ensure that a patient’s wishes are followed. 

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Contracts for Pain Meds?

Lindsay Tice

Sun Journal

November 18, 2012

In an effort to combat Maine’s high rate of prescription drug addiction, doctors are asking patients to sign a controlled-substances agreement that, in part, allows the doctor to ask for a blood or urine sample at any time to ensure patients are taking their pills, rather than selling them, and are taking those pills only.

Link: Pain Contracts – Unintended Consequences, Richard Payne, MD, The Bioethics Channel, April 29, 2010

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