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Journeys in Genetics: Ethical, Legal, and Social Implications

Tue, September 27, 2016, 3:00pm
Location: 
2610 SPH I

Journeys in Genetics: Ethical, Legal, and Social Implications
with Toby Citrin, J.D. and Scott Roberts, Ph.D.


September 27, 2016
3:00 - 4:00 p.m.
2610 SPH I
1415 Washington Heights
Ann Arbor, MI 48109-2029


Sponsored by Certificate Program in Public Health Genetics 20th Anniversary Seminar Series


"Journeys in Genetics" is an interactive series of seminars that will highlight the unique personal and professional paths that the Certificate Program in Public Health Genetics (CPHG) faculty members have traversed throughout their careers in the field of public health genetics. In this seminar, Professor Citrin will describe a phone call from Detroit's Mayor in 1970, a request from Francis Collins in the early '90s, creation of the Center for Public Health and Community Genomics in 2001, and projects engaging minority communities in learning about genetics and helping to shape policies to guide the field. Professor Roberts will discuss his research program on how individuals appraise and respond to personal genetic information in contexts including genetic susceptibility testing for Alzheimer's disease, cancer genomics, and direct-to-consumer genetic testing.

Tanner Caverly and colleagues performed a systematic review to determine how U.S. cancer prevention and screening recommendations present the potential benefits and harms associated with the procedures. They found that 69% of recommendation statements either did not quantify benefits and harms or presented them in an asymmetric manner. They conclude that improved presentation of benefits and harms in guidelines would better ensure that clinicians and patients have access to the information required for making informed decisions.

Caverly TJ, Hayward RA, Reamer E, Zikmund-Fisher BJ, Connochie 2, Heisler M, Fagerlin A. Presentation of Benefits and Harms in US Cancer Screening and Prevention Guidelines: Systematic Review. J Natl Cancer Inst. 2016 Feb 24;108(6). pii: djv436. doi: 10.1093/jnci/djv436.
 

Research Topics: 

Sorry, Doc, that doesn't fit my schedule (Feb-04)

Patients sometimes skip treatments because they just feel too busy. What should physicians do when their patients ignore their recommendations?

Imagine you are a businessperson who works long hours and you are on your way up to having a successful and lucrative career. You have a major business deal that will consume nearly all of your time over the upcoming month and your boss is relying on you to make sure the deal goes through. This is your chance to really make your mark and show your corporation that you are the kind of person that can handle deals as big as this one. Also suppose you have been smoking on and off for 25 years. You know it's a bad habit that could destroy your lungs, but you just can't quite kick it. Lately, you have been feeling tired, you have been experiencing chest pains when you are really busy at work and when you exercise, and you have had trouble breathing when climbing a flight of stairs. The chest pains are usually relieved by a little rest, but you decide it's time to get this examined by a doctor.

One day after work, you go to see Dr. Coral, who gives you a stress test and determines that you'll need an appointment for an angiogram to better evaluate your coronary arteries. Fortunately, you find one free day right before things get hectic at work, so you schedule the angiogram. Now imagine you have just had the angiogram and you are recovering in a paper gown waiting for Dr. Coral to come back with the results. Dr. Coral enters the room to speak with you and he has a serious look on his face. He says,

"I have both good and bad news for you. The angiogram shows that your 3 main coronary arteries are all severely blocked. The good news is that we caught this before you had a major heart attack."

"The bad news is that I am recommending you have triple bypass surgery as soon as possible. Your heart is working overtime, and it is just a matter of time until it gives out."

The news is shocking, but in addition to your health concerns, you also have the business deal to worry about. This deal is an opportunity to make a name for yourself, and your boss has been very vocal that he was counting on you, trusting that you'd be the one for the job. You find yourself having to weigh your work ambitions against the recommendation from Dr. Coral because if you get surgery, there is no way you'd be able to take on your current work responsibility.
 
Which of the following decisions would you be most likely to make?
 
  • I would put aside Dr. Coral's recommendation and instead take responsibility at work for the current deal. I'll wait to have surgery in about a month.
  • I would follow Dr. Coral's recommendation by having surgery immediately, even though this forfeits the current opportunity at work.

A little feedback on what you chose.

It's not that physician's don't care about your other values, but they are primarily concerned about your health, and you might not even have lived long enough to finish the business deal if you didn't have this surgery immediately. This does, however, bring up an important fact: patient's do sometimes reject their physician's medical judgment, and it can be at a great cost to their health.
 
Why should a patient be part of the decision-making process?
 
Why shouldn't Dr. Coral just tell you that you need surgery and leave no alternative? Efforts to share decision-making with patients are important because they acknowledge patients' rights to hold views, to make choices, and to take actions based on personal values and beliefs. In addition to being ethically-sound, this shared decision-making process also leads to improved patient health outcomes.
 
What can a physician do to help the patient choose surgery?
 
To answer this question, first it needs to be emphasized that in order for a patient to be able to participate in the decision-making process, the patient must be able to soundly make decisions. This sounds abstract and subjective, but it can be broken down into something a little more concrete. Decision-making capacity (DMC) is based on four guidelines:
 
The patient is able to:
 
  • understand the information about the condition and the choices available;
  • make a judgment about the information in keeping with his or her personal values and beliefs;
  • understand the potential outcomes or consequences of different choices; and
  • freely communicate his or her wishes
Based on these four elements, it is possible to see what a physician can do to help facilitate a "good" health decision. In order to make sure a patient fully understands the situation, a physician can ask him or her to state their understanding of the problem and of the treatment options. Also, a physician should use clear and unambiguous language with the patient at all times. Although a report might be quite clear from a physician's perspective, a patient might not be as clear about all the details. In the situation you were asked to imagine, Dr. Coral should tell you that you will die without this surgery and that waiting is not a safe option.
Also, there might be other factors keeping a patient from following a physician's recommendation. Again, in your hypothetical situation, your boss was putting a lot of pressure on you not to let him down. Also, this decision would potentially have an effect on your advancement at work. You might not have felt free to elect surgery even if you knew it was the only good decision for your health. By directly acknowledging and addressing a patients' concerns, physicians may facilitate a decision for the surgery.
 
In conclusion, if a physician feels that a patient is not able to fulfill one or more of the elements of DMC then his or her ability to make that decision should be brought into question and surrogate decision makers should be sought. For more serious decisions, the standards for DMC should be higher than for less important decisions or those with less significant outcome differences among the choices.
 
For more information see:

 

2018 CBSSM Research Colloquium and Bishop Lecture (Barbara Koenig, PhD)

Tue, May 01, 2018, 8:30am
Location: 
Henderson Room, Michigan League, 911 N. University Avenue, Ann Arbor, MI

The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium was held Tuesday, May 1, 2018 at the Henderson Room, Michigan League, 911 N. University Avenue, Ann Arbor, MI 48109.

The CBSSM Research Colloquium featured the Bishop Lecture in Bioethics as the keynote address. Barbara Koenig, PhD presented the Bishop Lecture with a talk entitled: “Does Enhancing Individual Choice and Control Promote Freedom? Challenges in Contemporary Bioethics."

Barbara A. Koenig, Ph.D. is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. She is the Director of “UCSF Bioethics,” a nascent program that spans ethics research, clinical ethics, and ethics education across the university’s four professional schools. Prof. Koenig pioneered the use of empirical methods in the study of ethical questions in science, medicine, and health. Prof. Koenig’s current focus is emerging genomic technologies, including biobanking policy and using deliberative democracy to engage communities about research governance. Her work has been continuously funded by the National Institutes of Health since 1991. Currently, she: 1) directs the ELSI component of a NICHD award focused on newborn screening in an era of whole genome analysis, 2) is P.I. of UCSF’s Program in Prenatal and Pediatric Genomic Sequencing (P3EGS), part of the CSER2 national network, and, 3) is supported by NCI to conduct an “embedded ethics” study of the Athena “Wisdom” PCORI-funded clinical trial of genomic risk-stratified breast cancer prevention. Previously, she directed an NHGRI-funded “Center of Excellence” in ELSI Research. Prof. Koenig was the founding executive director of the Center for Biomedical Ethics at Stanford University; she created and led the Bioethics Research Program at the Mayo Clinic in Rochester, Minn. She received her Ph.D. from the University of California, Berkeley and San Francisco joint program in Medical Anthropology. She is an active participant in policy, having served on the ethics committee that advises the director of the CDC and the Department of Health and Human Services “Secretary’s Advisory Committee on Genetic Testing.” She recently served on a state-wide “Health Data Governance Task Force” which advised UC’s president.

The CBSSM Research Colloquium (9 a.m. to 2 p.m.) brings together presenters highlighting research related to bioethics, health communication, and medical decision making.

2018 Colloquium Schedule:
 

  • 8:30     Check in, refreshments
  • 9:05     Welcome
  • 9:10     Presentation 1: “Parent Perceptions of Antenatal Consultation for Extreme Prematurity" Stephanie Kukora, MD
  • 9:35     Presentation 2: “Hospice Care Quality in U.S. Nursing Homes Reported by Patients and Caregivers in Yelp Reviews” Chithra Perumalswami, MD, MSc
  • 10:00   Medical Student in Ethics Award: Megan Lane
  • 10:10   Presentation 3: “Impact of MCI on Patient and Care Partner Preferences and Physician Decision Making for Cardiovascular Treatment” Bailey Reale, MPH & Emilie Blair
  • 10:35   Presentation 4: “It’s all about Context: A Mixed-Methods Study of Local Context Assessment by Institutional Review Boards” Adrianne Haggins, MD
  • 11:00   Break
  • 11:15   Bishop Lecture: Barbara Koenig, PhD
  • 12:45  Lunch

Edward Goldman, JD, BA

Faculty

From 1978 to 2009, Ed was head of the U-M Health System Legal Office.  In 2009 he moved into the Medical School Department of ObGyn as an Associate Professor to work full-time on issues of sexual rights and reproductive justice.  He has teaching appointments in the Medical School, the School of Public Health, the Law School, and LSA Women's Studies.  He teaches courses on the legal and ethical aspects of medicine at the Medical School, the rules of human subjects research at the School of Public Health and reproductive justice in LSA and the Law School..  In 2011, Ed went to Ghana and helpe

Research Interests: 
Last Name: 
Goldman

What is the price of life? (Aug-03)

Do you think that your life is worth more than the amount that the government usually uses as the maximum to spend to provide one year of life?

Imagine that you are a member of a government panel that is trying to decide how cost-effective a medical treatment must be in order for the government to cover the costs of the treatment. Suppose that a certain treatment could provide one additional year of life to an otherwise healthy person. What is the highest amount the government should be willing to pay per person for this treatment?

How do your answers compare?

For the past twenty years, the figure most often used as the maximum amount to spend to provide one year of life has been $50,000. This figure was originally proposed since it was the cost of a year of kidney dialysis, a lifesaving treatment that the U.S. government funds in Medicare.

Should the number be higher or lower than the current standard?

Conventional wisdom would suggest that the number be higher to take into account the inflation that has occurred in the years since the standard was developed. Current practices such as annual Pap smear screening for women with low risk for cervical cancer, which has a cost of $700,000 per year of life gained, also suggest that society is willing to pay more than the current standard for a year of life. The authors of the cited article recommend, based on current treatment practices and surveys of the general public, that the cost-effectiveness threshold should be revised to be around $200,000.

Should the number increase, decrease, or stay the same over time?

Again, it seems that the threshold amount should increase over time due to inflation. However, other factors come in to play that affect the value.

Since new technologies are emerging all the time, some of which will be deemed cost-effective, there will be more and more treatments to be offered in the future. Also, the rate of use of treatments is an important consideration, because even if a new treatment is more cost-effective than an old one, if it is used more often it will end up costing more to society overall. With more treatments becoming available and more people being given treatments, the threshold cost will probably have to decrease so that insurance companies and the government can keep up with the increasing availability and demand.

Why is this important?

Insurance companies and government health care entities face a continuing struggle when trying to determine which medical treatments to cover. Health care costs are increasing rapidly, so these groups will be facing even tougher decisions in the future. Establishing cost-effectiveness guidelines would be extremely helpful as an aid to making the decisions about treatment coverage. Evidence shows that the current threshold is probably not an accurate reflection of the desires of society or actual prescribing practices. It needs to be adjusted to become useful once again, and must be reevaluated periodically to make sure the value keeps up with trends in the health care market, rather than being left alone without question for two decades as is the current situation.

For more information see:

Ubel PA, Hirth RA, Chernew ME, Fendrick AM. What is the price of life and why doesn't it increase at the rate of inflation? Archives of Internal Medicine. 163:1637-1641, 2003.

Bioethics Grand Rounds: Janice Firn, MSW; Andrew Shuman, MD; Christian Vercler, MD

Wed, January 27, 2016, 12:00pm
Location: 
UH Ford Amphitheater & Lobby

"Implementation of the Program in Clinical Ethics"

Janice Firn, MSW; Andrew Shuman, MD; Christian Vercler, MD

Abstract: The Program in Clinical Ethics within the Center for Bioethics and Social Sciences in Medicine represents an expansion of existing services designed to promote a culture of patient-centered excellence by developing a comprehensive set of ethics-related activities at UMHS. We will introduce and outline the projects and services available to all members of the UMHS Community.

PIHCD: Jessica Mellinger

Thu, February 11, 2016, 4:00pm
Location: 
B004E NCRC Building 16

Alcoholic liver disease represents a large and growing portion of the liver disease in the US and worldwide, and the most powerful treatment shown to improve outcomes for patients with ALD is complete abstinence from alcohol.  Unfortunately, many patients with ALD continue to drink or relapse to alcohol use, even after their diagnosis, worsening liver-related outcomes and  mortality. Jessica Mellinger will be speaking about her K award project to improve outcomes for patients with ALD by developing and testing a pilot intervention designed to increase engagement in alcohol use disorder treatment.

CBSSM Seminar: Jason Rose, PhD (Toledo)

Wed, March 09, 2016, 3:00pm to 4:00pm
Location: 
NCRC, Building 16, Room 266C

Jason Rose, PhD
Associate Professor
University of Toledo

Title: “Decisions, Decisions: The Impact of Treatment Choice on Health-Related Outcomes”

Abstract: From selecting a health care provider to choosing among an array of over-the-counter treatment options, choice has become a ubiquitous element of health care. Using an experimental, lab-based approach, the current research examines how, why, and when treatment choice impacts health-related outcomes (e.g., pain, discomfort).

 

Thu, March 03, 2016

In an interview with MedicalResearch.com, Dr. Sarah Hawley discusses her new study regarding breast cancer patients' understanding of risk. She states, "Research has shown that breast cancer patients do not have a good understanding of their risk of distant recurrence, and and that the fear of cancer spreading is one of the biggest concerns that patients have. The research that has been done shows that most patients over-esimate this risk, and think they have a bigger chance of the cancer coming back than they actually have."

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