On March 1, 2017. Public Responsibility in Medicine and Research (PRIM&R) hosted a workshop entitled, “Ethics of Data Access, Use, and Sharing for Human Subjects Research Workshop.” Researchers, institutional representatives, ethicists, policy makers and many others examined new scientific opportunities and important ethical challenges that arise from collecting, accessing, sharing and using individual’s data for research.
The workshop considered four complex ethical areas: 1) the value of research with shared dates; 2) individuals’ rights and expectations with regards to their data; 3) consent, authorization, and data stewardship; and 4) responsibility for the ethical oversight of research involving data access, use, and sharing.
In Panel II, “Conceptualizing an individual’s rights, interests, and expectations with regard to their health and other data,” Dr. Celia Fisher, Director of Fordham University’s Center for Ethics Education and HIV and Drug Abuse Prevention Research Ethics Training Institute, focused on concerns related to socially marginalized populations and group harms that emerge in the collection and use of large data sets. Dr. Fisher stressed the importance of “fostering public transparency and stakeholder participation in the risk-benefit analysis of how big data are used.”
To watch Dr. Fisher’s presentation, please click play on the embedded video below. For the entire workshop recording, please visit PRIM&R’s website here.
I will never forget the day my mother got diagnosed. I could swear that just yesterday I was thirteen years old waiting anxiously to be called in from the waiting room of some fancy New York State doctor’s office. I was young, but I had some idea of what was going on. I knew my parents and I were there because they were going through a divorce and fighting for custody of me. What I did not know was that we were about to endure a court-ordered psychiatric evaluation and that the results were going to change my life forever.
“Madeleine, your mom is very sick,” the psychiatrist attempted to explain to me. I did not understand. I did not know a sick person could look perfectly healthy. “It’s not a physical sickness, it’s in her head. She has a mental disorder called Paranoid Schizophrenia.” She went on using big words to explain how my mother’s brain “wasn’t like other people’s brains.” I sat there listening closely, hanging on every word the woman was saying to me. “She can’t help the choices that she makes, it’s not her fault that she is the way that she is. She needs help.” Every day since that day in the doctor’s office, that remark replays in my head over and over. “She can’t help the choices she makes.”
That is what gave me the most trouble. I sat around for years and years watching the choices that my mother was making, unable to intervene. If she cannot help the choices she makes, why could my dad or my mother’s other family not make the choices for her? Why could nobody make her take medication? I eventually learned that it was because my mother was sick, but “not sick enough.” The court ruled in favor of autonomy and said that my mother still had the right to make her own medical decisions. According to them she was functional and was not posing an immediate danger to herself or others. I understand autonomy. Autonomy is defined as “a principle in which a person should respect the rights of other individuals to freely determine their own choices and decisions” (Jonas). I understand how important free will and the ability to make choices about your own body are. It is hard for me, however, to understand how you can continue to honor a person’s right to make their own decisions, when every decision they make is only hurting them. It is hard to sit there, as a loved one, and not want to just make them take the medication they need to get better, or force them participate in that research study that just might help.
Psychologists are awarded the APA Ethics Committee Ethics Educator Award for demonstrating outstanding and innovative contributions to the profession of psychology through ethics education activities. These ethics education activities include presentations, workshops, publications and more.
Neil Gorsuch Speech at Trump Hotel Raises Ethical Questions
“Justice Neil M. Gorsuch, President Trump’s Supreme Court appointee, is scheduled to address a conservative group at the Trump International Hotel in Washington next month, less than two weeks before the court is set to hear arguments on Mr. Trump’s travel ban.”
CRISPR and the Ethics of Human Embryo Research
“Although scientists in China and the United Kingdom have already used gene editing on human embryos, the announcement that the research is now being done in the United States makes a U.S. policy response all the more urgent.”
The Ethics Issue Blocking Organ Transplant Research
“The ethics of so-called donor-intervention research are incredibly fraught. How do you get informed consent and from whom? The dead donor? The live recipient—or possibly dozens of live recipients getting tissues or organs from a single donor, fanned out across the country at different hospitals each with their own ethics review boards? All this would unfold against intense time pressure. Every minute of delay is a minute in which the organ is deteriorating.”
What do revised U.S. rules mean for human research?
“Following a contentious 5½-year process, the U.S. Department of Health and Human Services (HHS) Office for Human Research Protections (OHRP) released a revised “Common Rule,” which governs federally funded research involving human subjects (1). The updated rule includes a number of welcome changes for U.S. institutions and researchers, and their scientific collaborators abroad.”
“We have made more progress in artificial intelligence (AI) in the last three years than in the preceding three decades. AI is transforming from handy little applications that make our lives easier (from Alexa and Siri to Uber and Netflix) to something more powerful…”
The American Psychoanalytic Association announced earlier this month that members of the association no longer need to abide by the long-established “Goldwater Rule” named after 1964 presidential candidate Barry Goldwater. The rule, which can be found in Section 7.3 of the American Psychiatric Association’s (APA) Ethics Code, cautions against most psychiatrists and other mental health professionals offering opinions about an individual publicly – including the President of the United States.
In an interview with Fordham News, Dr. Fisher stated, “Revising ethical standards to address a particularly problematic political figure or to condone the publication of a book does not reflect well on the association.The public should be aware that the American Psychoanalytic Association organization does not represent the field of psychiatry per se, but a group of professionals who practice a particular therapeutic orientation within the mental health profession known as psychoanalysis.”
“Responsible diagnosis in psychoanalysis, as in other mental health fields, relies on assessment techniques that are characterized by interactions with and analysis of patient responses to specific established questions. A professionally and ethically responsible diagnosis cannot be determined in the absence of such interactions or assessments.For example, although the American Psychological Association has not adopted a “Goldwater Rule,” the importance of appropriate assessments are intrinsic in its ethics code, which forbids psychologists from providing opinions of the psychological characteristics of individuals if they have not “conducted an examination of the individuals adequate to support their statements or conclusions”. To be sure, the mental health profession can and should share their knowledge with the public, but irresponsible “diagnosis” diminishes the profession and does not serve the public it seeks to inform.”
The American Psychoanalytic Association’s Statement on “Goldwater Rule” can be found on their website.
This May, the Center for Ethics Education at Fordham University oversaw it seventh successful installment of installment of Theories and Applications in Contemporary Ethics. The theme of this year’s intensive ethics workshop was Living with Moral Disagreement: Activism, Advocacy, and Interaction. In this course, students from Fordham University and around the world engaged with faculty members from six disciplines on how to live in a world with a vast and deep moral disagreement
The Center brought together Michael Baur, PhD on Law, Melissa Labonte, PhD on Political Science, Charlie Camosy, PhD on Theology, Orit Avashai, PhD on Sociology, Gwenyth Jackaway, PhD on Communication and, the Center’s new Director of Academic Programs, Bryan Pilkington, PhD on Philosophy. From each of these distinct perspectives, the faculty engaged with students on topics about which we deeply disagree, including rights to healthcare, religious and legal exemptions around the concept of death and female genital mutilation or cutting. The conversation was lively, practical and steeped in the deep theoretical commitments.
The Center was pleased to have Lerato Molefe as a participant in this workshop, thanks to the Fordham/Santander Universities International Scholarship in Ethics Education. Lerato Molefe visited Fordham from Johannesburg, South Africa where she is the founding and managing director of Naaya Consulting, a legal and strategy consulting firm for large and high growth organizations spanning a range of industries across the African continent. She has degrees from Harvard Law School, Fletcher School of Law and Diplomacy at Tufts University and Smith College.
How to Apply for the International Santander Universities International Student Scholarships
Politics and World News White House Waivers May Have Violated Ethics Rules
White House waiver allows all White House aids to communicate with news organizations, even if they involve a “former employer or former client.” Stephen K. Bannon, senior White House strategist, will be able to communicate with editors at Breitbart News.
Tuskegee syphilis study descendants speak about tragedy, seek healing
For 40 years starting in 1932, medical workers in the segregated South withheld treatment for unsuspecting men infected with a sexually transmitted disease simply so doctors could track the ravages of the horrid illness and dissect their bodies afterward. Decades later, descendants continue to gather in memory of their fathers and grandfathers.
When Will Robots Deserve Human Rights? As robotics and AI advance, sophisticated machines or “robots” may match human capacities in intelligence, awareness, and emotions. Should be granted human-equivalent rights, freedoms, and protections?