» Research Ethics Where the World Finds Bioethics Sat, 09 Jul 2016 09:00:06 +0000 en-US hourly 1 Its not just mental health studies: Doctors rarely ask adolescent patients about their sexual orientation & LGBT youth are afraid of bias Tue, 21 Jun 2016 13:48:18 +0000 Continue reading ]]> 0 Best intentions, worst outcomes: Ethical and legal challenges for international research involving sex workers Fri, 17 Jun 2016 16:00:52 +0000 Continue reading ]]> 0 Clinical Trials Infrastructure as a Quality Improvement Intervention in Low- and Middle-Income Countries Tue, 24 May 2016 20:25:28 +0000 0 The Potential for Infrastructure Benefits and the Responsiveness Requirement Tue, 24 May 2016 20:23:22 +0000 0 For cholesterol study volunteer, an unsettling discovery in a Science paper: herself Thu, 12 May 2016 12:14:13 +0000 0 Why this lab-grown human embryo has reignited an old ethical debate Mon, 09 May 2016 12:54:50 +0000 0 Ethics of research in usual care settings: Data on point Wed, 27 Apr 2016 17:26:18 +0000 0 Adrift in the gray zone: IRB perspectives on research in the learning health system Wed, 27 Apr 2016 17:24:41 +0000 0 The patient’s perspective on the need for informed consent for minimal risk studies: Development of a survey-based measure Wed, 27 Apr 2016 17:23:51 +0000 0 Patient and physician views about protocolized dialysis treatment in randomized trials and clinical care Wed, 27 Apr 2016 17:22:56 +0000 0 Alternative consent models for comparative effectiveness studies: Views of patients from two institutions Wed, 27 Apr 2016 17:21:34 +0000 0 Patients’ views concerning research on medical practices: Implications for consent Wed, 27 Apr 2016 17:20:02 +0000 0 The Paradigm of the Paradox: Women, Pregnant Women, and the Unequal Burdens of the Zika Virus Pandemic Tue, 26 Apr 2016 19:54:21 +0000 0 Dr. Celia B. Fisher Examines Whether IRBs Hinder HIV Research with LGBT Youth Fri, 22 Apr 2016 15:04:01 +0000 Continue reading ]]> 0 BioethicsTV: “Heartbeat” tackles therapeutic misconception Fri, 08 Apr 2016 02:32:44 +0000 by Craig Klugman, Ph.D.

On episode 4 of Heartbeat, the heroine, Dr. Panttiere has received hospital funding to try an experimental cancer treatment on 5 patients. The intervention uses laparoscopic surgery to implant radioactive pellets directly into tumors. The show presents a good debate on the values of enrolling patients because the characters discuss the hope of more time versus providing patients with comfortable quality of life at the end of life. The side-by-side contrast is quite literal as the camera shows Panttiere sitting next to her paramour, Dr.…

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Fisher describes innovative approach to research involving vulnerable adolescents at OHRP conference Thu, 07 Apr 2016 15:05:27 +0000 Continue reading ]]> 0 An Ethical Exploration of Barriers to Research on Controlled Drugs Fri, 01 Apr 2016 13:00:58 +0000 0 Scientists Grow “Dinosaur Legs” in Chicken Embryos Thu, 17 Mar 2016 13:00:37 +0000 0 Should All Research Papers Be Free? Tue, 15 Mar 2016 13:00:13 +0000 0 Ethics & Society Newsfeed: March 4, 2016 Fri, 04 Mar 2016 14:30:31 +0000 Continue reading ]]> 0 Doing Global Science: A Guide to Responsible Conduct in the Global Research Enterprise Tue, 23 Feb 2016 22:58:33 +0000 0 French Drug Trial Disaster Leaves One Brain Dead, Five Injured Sat, 16 Jan 2016 23:21:37 +0000 0 ORI Names New Director Wed, 06 Jan 2016 18:29:32 +0000 0 Zafgen halts obesity drug trial after second patient death Mon, 07 Dec 2015 17:51:13 +0000 0 Adolescent research participants’ descriptions of medical research Wed, 02 Dec 2015 23:35:08 +0000 0 Treading the Line Between Sensational and Groundbreaking Science Tue, 01 Dec 2015 18:50:42 +0000 0 Bioethics team creates online repository of advice on ethical research practices Mon, 23 Nov 2015 18:58:49 +0000 0 Stanford scientists criticize NIH moratorium Fri, 13 Nov 2015 20:50:45 +0000 0 Coca-Cola Spends Millions Of Dollars Funding Research That—Surprise!—Says Soda Is Just Fine Thu, 12 Nov 2015 20:51:12 +0000 0 A Bioethicist on Mars Mon, 02 Nov 2015 07:18:08 +0000 by Craig Klugman, Ph.D.

The film, The Martian, is an exciting Robinson Crusoe space adventure. Based on the book of the same name by Andrew Weir, the film stays fairly close to the original source. Astronaut Mark Watney is stranded on Mars when he is impaled by a metal rod in the middle of a sudden and violent storm. Thought dead due to a malfunction of his suit, his fellow astronauts leave him and make an emergency evacuation to return to Earth.…

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Young People’s Experiences of Participation in Clinical Trials: Reasons for Taking Part Sun, 01 Nov 2015 22:45:56 +0000 0 Patient dies during Zafgen’s obesity drug trial Mon, 19 Oct 2015 20:14:03 +0000 0 If I Were Running the Place Fri, 16 Oct 2015 09:10:58 +0000 0 Human Subjects Research “Vulnerability” Tue, 13 Oct 2015 03:21:07 +0000 by J.S. Blumenthal-Barby, Ph.D., MA

Revisions are being suggested to the Federal Policy for the Protection of Human Subjects through the Notice of Proposed Rulemaking (NPRM). The changes being suggested are numerous (helpful summaries can be found here and here My aim is not to review those changes, but to point out a curious conceptualization of vulnerability affirmed in the NPRM.

Consider the following section (regarding conditions for IRB approval) of the original regulations:

46.111(b) – When some or all of the subjects are likely to be vulnerable to coercion or undue influence, such as children, prisoners, pregnant women, mentally disabled persons, or economically or educationally disadvantaged persons, additional safeguards have been included in the study to protect the rights and welfare of these subjects.…

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Your Biology is in My Technology Mon, 05 Oct 2015 22:48:12 +0000 by Craig Klugman, Ph.D.

The PBS series Open Mind has been on television for nearly 60 years. The program “is a thoughtful excursion into the world of ideas.” The December 30 episode was an interview with Dr. Maria Freire, President of the Foundation for the National Institutes of Health. The host of this show, Alexander Heffner, asked AJOB and BIOETHICS.NET to share this interview, about which he said, “it’s among our most fascinating conversations.”

The conversation is about exploring is about the intersection of biology and technology, harnessing big data to learn about human health and find cures for human disease.…

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Placebo Effects and Informed Consent Thu, 01 Oct 2015 19:53:33 +0000 0 True Confessions: Keeping up with the literature Thu, 01 Oct 2015 08:47:03 +0000 by Craig Klugman, Ph.D.

When I was a graduate student learning about the job of being an academic, my advisor gave me some good advice. He told me to teach my classes, minimize my service, write everyday, and keep up with the literature. Teaching innovative classes using technology and active learning takes more time than lectures and seminars did. I became a department chair, which automatically increased my service duties. I still write, nearly everyday. What I do not have time for is keeping up with the literature.…

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Ashley Madison & Using Stolen Data Thu, 10 Sep 2015 20:35:01 +0000 by Arthur L Caplan, PhD and Charles Seife, MS

This past August, the public was treated to gigabytes of data stolen from the Ashley Madison website, including detailed records on millions of people who had registered for their service. Their service, of course, is a dating site meant to facilitate extra-marital affairs. The message isn’t subtle, as anyone who’s got their upbeat jingle — “I’m looking for someone other than my wife!” — stuck in his head can attest.…

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Don’t Miss this Opportunity to Shape Federal Policy! Thu, 10 Sep 2015 17:14:16 +0000 by Ellen Fox, MD

Yesterday, the Federal Register published a long-awaited Notice of Proposed Rulemaking to “modernize, strengthen, and make more effective” the Federal Policy for the Protection of Human Subjects known as “the Common Rule.” The proposed changes are endorsed by 16 Federal agencies, plus several others that “intend to adopt the proposed rule” through a separate rulemaking. This event is momentous for several reasons. First, there have been almost no changes to the Common Rule for over 30 years.…

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Broad Consent for Research With Biological Samples: Workshop Conclusions Tue, 01 Sep 2015 19:49:44 +0000 0 Patient Perspectives on the Learning Health System: The Importance of Trust and Shared Decision Making Tue, 01 Sep 2015 19:47:14 +0000 0 Prudentia Populo: Involving the Community in Biobank Governance Tue, 01 Sep 2015 19:43:41 +0000 0 Hashtag Advocacy or Slacktivism: How Should We Evaluate the Impact of Social Media Campaigns for Public Health? Mon, 31 Aug 2015 12:00:25 +0000 by Macey L. Henderson, J.D.

It takes more than a TV news story or a Twitter hashtag campaign to save lives. Last August’s viral ice bucket challenge did more than just improve public health awareness of an issue. Its now been reported to have made a real impact into research for a rare disease, not just for improved public education and awareness.

An estimated 5,000 persons receive a diagnosis of Amyotrophic Lateral Sclerosis (ALS) each year in the United States, with an estimated prevalence of 12,000 cases according to the Centers for Disease Control and Prevention (CDC).…

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Reproducibility Project or Research Police? Tue, 25 Aug 2015 04:08:24 +0000 0 Ben Carson Conducted Research on Fetal Tissue — And Defends It Fri, 14 Aug 2015 17:53:23 +0000 0 Evolving Challenges and Research-Needs Concerning Ebola Thu, 13 Aug 2015 17:57:41 +0000 0 Children and Clinical Research: Ethical Issues Wed, 12 Aug 2015 17:53:30 +0000 0 The Stanford Prison Experiment film: An Essential Teaching Tool Tue, 04 Aug 2015 11:00:11 +0000 By Craig Klugman, Ph.D.

In teaching research ethics, there are a few “classic cases” that we offer students as examples of where human subject research went wrong: Tuskegee Study of Untreated Syphilis, the Nazi medical experiments, Willowbrook Hepatitis Experiments, human radiation experiments, and (now) the Guatemala syphilis study, among others. When discussing social science examples, the two studies that are usually taught at Milgram’s obedience studies and Zimbardo’s Stanford Prison Experiment.

As an undergraduate at Stanford, my Psychology 101 teacher was Philip Zimbardo.…

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Investigating Two Claims Against Planned Parenthood: Center of Medical Progress’s Secret Videos Mon, 27 Jul 2015 22:00:39 +0000 by Craig Klugman, Ph.D.

Before you being reading, I have a disclaimer: Growing up, my mother worked for Planned Parenthood. As a nurse, she practiced in their clinics offering well women services, counseling, and contraception. After many years, she went on to direct their clinic’s in vitro fertilization program. I also heard the word “Planned Parenthood” stated with a quick northeastern accent. Said that way, as a child, I thought the place was called “Plant Parenthood” and wondered what plants had to do with women’s health.…

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Video of Planned Parenthood executive discussing tissue, organ prices sparks abortion firestorm Fri, 17 Jul 2015 23:53:07 +0000 0