“She Can’t Help The Choices She Makes”

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STUDENT VOICES | CHYNN PRIZE FIRST-PLACE WINNER

By Madeleine Cardona

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.

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Ethics & Society Newsfeed: August 18, 2017

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Politics

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.”

Trump’s Washington DC hotel turns $2m profit amid ethics concerns
“Donald Trump’s company is said to have taken home nearly $2m in profits this year at its extravagant hotel in Washington, DC – amid ethics concerns stemming from the President’s refusal to fully divest from his businesses while he is in office.”

3 representatives want to officially censure Trump after Charlottesville
“In response to Donald Trump’s controversial remarks about the violence in Charlottesville, Virginia, three Democrats want to censure the president.”

Does Trump’s Slippery Slope Argument About Confederate Statues Have Merit?
“NPR’s Robert Siegal talks with Ilya Somin, a professor of George Mason University, about President Trump’s warning that pulling down Confederate statues may lead to a slippery slope in which monuments to the Founding Fathers are torn down.”

Bioethics/Medical Ethics and Research Ethics

Vaccination: Costly clash between autonomy, public health
Bioethical principles in conflict with medical exemptions to vaccinations

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.”

Exclusive: Inside The Lab Where Scientists Are Editing DNA In Human Embryos
“[Critics] fear editing DNA in human embryos is unsafe, unnecessary and could open the door to “designer babies” and possibly someday to genetically enhanced people who are considered superior by society.”

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.”

NSF reiterates policy on teaching good research habits despite its limitations
“The National Science Foundation (NSF) in Arlington, Virginia, has decided to double down on its implementation of a congressionally mandated policy aimed at reducing research misconduct among NSF-funded scientists, despite a new report that notes problems with the agency’s approach.”

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.”

Technology and Ethics

The Ethics of Doxing Nazis on Social Media
“The important question is: does any of this help?”

The importance of building ethics into artificial intelligence
“Understand ethical AI and its role in the future of work, recruit talent that understands AI – and its power to address workplace challenges, develop AI that runs on data reflecting the diversity of its users…”

The Ethics of Artificial Intelligence
“Establish an ethics committee, pursue innovation safely, create a solid foundation, choose autonomy, not regulation…”

“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…”


Philosophy and Business Ethics

Are corporations becoming the new arbiters of public morality?
“After Charlottesville, CEOs have become our public conscience. Here’s what that says about capitalism in America.”

How to be Ethical in the Workplace, According to 3 Philosophers
“Whether you’re a journalist, banker, salesman, chef—whatever your career path may be—you’re obviously going to want to be a good professional. A key factor in being “good” in any profession is to be ethical…”

User Beware: Privacy Settings just a Facade

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By Brenda Curtis, Ph.D.

Social media platforms continue to improve and refine their privacy settings as the demand for advanced user protections increases. Although enabling catered privacy settings to online profiles allows users to indicate who they would like share personal information with, it does not necessarily protect them from the platforms – i.e. websites and apps – themselves. Since social media accounts provide users with a sense of control over personal data, users assume that their information is safe. However, no matter what settings or privacy protections are applied to personal profiles, users do not generally have control over the online platform itself. What this means is the website or app being used usually shares information from accounts with third parties like advertising agencies or other databases. This data sharing is widespread throughout the industry, but it is not generally known by the public. This is partly because the disclosure of this sharing is done in the social media platform’s “Terms and Conditions” Which are often skimmed over or ignored.

Aside from social media websites, there are several other websites and apps that access your personal information via this information sharing to create a single database for everyone in the country. This is generally called data aggregation. One such site that has been in the news recently is FamilyTreeNow.  FamilyTreeNow is explicitly a genealogy site, and compiles information from various legal online sources to create a database full of personal information for genealogical research. This site pairs information from public records such as police records and court documents with the information collected from social media and address databases to create a sometimes way too revealing profile. Not too long ago, most of this information would only be accessible after exhaustive research, but Now FamilyTreeNow makes this information as easy to find as a click of a button, and publicly accessible.

Although the website might be fascinating for someone with genuine curiosity about their own family tree, the danger of anyone having access to information to a person’s age, birth year, address, family members and even public records is something that cannot be ignored. In today’s world, access to this type of personal information makes crimes like identity theft much easier to conduct and can provide the basis for access to financial accounts, credit records and other accounts and assets. For years we have been cautioning users against posting too much information online, but increasingly, due to data aggregators like FamilyTreeNow, this information is being posted without our knowledge or consent on publicly accessible sites.

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‘Goodness of Fit Ethics’ to Promote Health Research for LGBT Youth

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This past November, Public Responsibility in Medicine and Research (PRIM&R), a non-profit organization dedicated to the study and advancement of the highest ethical standards in the conduct of research, held its annual Advancing Ethical Research (AER) Conference featuring Dr. Celia B. Fisher, Director of the Center for Ethics Education and HIV and Drug Abuse Prevention Research Ethics Training Institute at Fordham University. She, along with Janet L. Brody, PhD and Eric Kodish, MD, were panelists on Panel III: Research With Children and Adolescents: Who and How Is the Decision Made to Participate?

Discussing her NIH-funded research on ethical issues in research involving LGBT youth, Dr. Fisher discussed the “interfamilial, regulatory and ethical tensions” that emerge in HIV prevention studies striving to recruit sexual and gender minority adolescents under 18 years of age.

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Study shows that marijuana has a significant role in relieving PTSD symptoms in combat veterans, more research on the way

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STUDENT VOICES

By: Kyle Pritz

The scantiness of marijuana research in the United States of America shouldn’t come as a surprise to anyone. The lack of research is tremendous. However, with new decriminalizing laws budding up, the role of marijuana usage in the symptomatic relief of anxiety, depression and post-traumatic disorders is receiving uncustomary attention in the United States.

In a study published in the Journal of Psychoactive Drugs in 2014, two American psychologists based at SUNY Albany, Jamie Bolles and Mitchell Earleywine, investigated the relationship between marijuana, expectancies, and post-traumatic stress symptoms. Using an online questionnaire and maintaining anonymity to enhance the response rate, Earleywine & Bolles surveyed more than 650 combat-exposed, male veterans who used marijuana at least once per week.

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NIH’s New Definition of “Children” Finally Gets it Right: A Welcome Change for Children’s Health Equity

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By Celia B. Fisher, Ph.D.

Under current federal research regulations, a “child” is defined as an individual younger than 21 years of age – a policy that has produced inequities in health research for youth younger than 18 years of age.

Beginning January 25th, 2016, that will change: the age of a child will be defined as an individual less than 18 years old. This is a welcome change that can begin to address the urgent need for age- and population-targeted research to avoid the use of treatments tested in young adult populations that may be unsuited for adolescents and children.

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“Berlin Patient,” First and Only Person Cured of HIV, Speaks Out

Timothy Ray Brown, long known only as the “Berlin Patient” had HIV for 12 years before he became the first person in the world to be cured of the infection following a stem cell transplant in 2007. He recalls his many years of illness, a series of difficult decisions, and his long road to recovery in the first-person account, “I Am the Berlin Patient: A Personal Reflection,” published in AIDS Research and Human Retroviruses, a peer-reviewed journal from Mary Ann Liebert, Inc., publishers. The article is part of a special issue on HIV Cure Research and is available free on the AIDS Research and Human Retroviruses website.

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