Premature Babies Study Raises Debate Over Risks and Ethical Consent; New York Times, 9/7/15

Sabrina Tavernise, New York Times; Premature Babies Study Raises Debate Over Risks and Ethical Consent:

"Professor Annas said the ruling simply meant that the families could not prove the study had caused the injuries, but that did not mean that it had not or that the consent forms, which he argues played a small role in the case, were obtained properly.

A good analogy, he said, was the decision by a federal judge last week to throw out a four-game suspension of the New England Patriots quarterback Tom Brady over his role in the deflation of footballs.

“That decision does not mean Brady is innocent any more than the Bowdre decision means that informed consent was properly obtained,” he said.

But others said the lawsuit’s failure was important, because it tipped the scales in favor of the researchers.

“This decision will mean, from a policy and practical point of view, that this kind of research is going to move on,” said Arthur Caplan, head of the division of medical ethics at NYU Langone Medical Center. He said if the judge had agreed to hear the case, “we’d have research slowing down, everyone waiting to see the outcome of a trial before starting projects.”

As for the New England Journal of Medicine authors, “they are a little enthusiastic,” he said, “but they are mainly right because they are breathing a giant sigh of relief that the legal system didn’t find enough to call the Support study researchers to task.”

Even so, the issue remains unresolved. The federal government is trying to come up with more explicit guidance about the consent process. A final version is expected next year. And the office that first found the trial’s consent practices lacking stands by its conclusion."

Did Facebook's experiment violate ethics?; CNN, 7/2/14

Robert Klitzman, CNN; Did Facebook's experiment violate ethics? :

"Editor's note: Robert Klitzman is a professor of psychiatry and director of the Masters of Bioethics Program at Columbia University. He is author of the forthcoming book, "The Ethics Police?: The Struggle to Make Human Research Safe." The opinions expressed in this commentary are solely those of the author...

In 1974, following revelations of ethical violations in the Tuskegee Syphilis study, Congress passed the National Research Act. At Tuskegee, researchers followed African-American men with syphilis for decades and did not tell the subjects when penicillin became available as an effective treatment. The researchers feared that the subjects, if informed, would take the drug and be cured, ending the experiment.

Public outcry led to federal regulations governing research on humans, requiring informed consent. These rules pertain, by law, to all studies conducted using federal funds, but have been extended by essentially all universities and pharmaceutical and biotech companies in this country to cover all research on humans, becoming the universally-accepted standard.

According to these regulations, all research must respect the rights of individual research subjects, and scientific investigators must therefore explain to participants the purposes of the study, describe the procedures (and which of these are experimental) and "any reasonably foreseeable risks or discomforts."

Facebook followed none of these mandates. The company has argued that the study was permissible because the website's data use policy states, "we may use the information we receive about you...for internal operations, including troubleshooting, data analysis, testing, research and service improvement," and that "we may make friend suggestions, pick stories for your News Feed or suggest people to tag in photos."

But while the company is not legally required to follow this law, two of the study's three authors are affiliated with universities -- Cornell and the University of California at San Francisco -- that publicly uphold this standard."

Facebook experiment may have broken UK law; Aljazeera, 7/2/14

Aljazeera; Facebook experiment may have broken UK law:

"A British data regulator has been investigating whether Facebook Inc broke data protection laws when it allowed researchers to conduct a psychological experiment on nearly 700,000 users of the social network, the Financial Times reported.

The Information Commissioner's Office (ICO), which monitors how personal data is used, is probing the controversial experiment and plans to ask Facebook questions, the newspaper reported on Tuesday."

Should Facebook Manipulate Users?: Jaron Lanier on Lack of Transparency in Facebook Study; New York Times, 6/30/14

Jaron Lanier, New York Times; Should Facebook Manipulate Users?: Jaron Lanier on Lack of Transparency in Facebook Study:

"Research with human subjects is generally governed by strict ethical standards, including the informed consent of the people who are studied. Facebook’s generic click-through agreement, which almost no one reads and which doesn’t mention this kind of experimentation, was the only form of consent cited in the paper. The subjects in the study still, to this day, have not been informed that they were in the study. If there had been federal funding, such a complacent notion of informed consent would probably have been considered a crime. Subjects would most likely have been screened so that those at special risk would be excluded or handled with extra care.

This is only one early publication about a whole new frontier in the manipulation of people, and Facebook shouldn’t be singled out as a villain. All researchers, whether at universities or technology companies, need to focus more on the ethics of how we learn to improve our work.

To promote the relevance of their study, the researchers noted that emotion was relevant to human health, and yet the study didn’t measure any potential health effects of the controlled manipulation of emotions."

Facebook Study Sparks Soul-Searching and Ethical Questions: Incident Shines Light on How Companies, Researchers Tap Data Created Online; Wall Street Journal, 6/30/14

Reed Albergotti and Elizabeth Dwoskin, Wall Street Journal; Facebook Study Sparks Soul-Searching and Ethical Questions: Incident Shines Light on How Companies, Researchers Tap Data Created Online:

Facebook Added 'Research' To User Agreement 4 Months After Emotion Manipulation Study; Forbes, 6/30/14

Kashmir Hill, Forbes; Facebook Added 'Research' To User Agreement 4 Months After Emotion Manipulation Study:

"Unless you’ve spent the last couple of days in a Faraday pouch under a rock, you’ve heard about Facebook’s controversial ‘emotion manipulation’ study. Facebook data scientist Adam Kramer ran an experiment on 689,003 Facebook users two and a half years ago to find out whether emotions were contagious on the social network. It lasted for a week in January 2012. It came to light recently when he and his two co-researchers from Cornell University and University of California-SF published their study describing how users’ moods changed when Facebook curated the content of their News Feeds to highlight the good, happy stuff (for the lucky group) vs. the negative, depressing stuff (for the unlucky and hopefully-not-clinically-depressed group). The idea of Facebook manipulating users’ emotions for science — without telling them or explicitly asking them first — rubbed many the wrong way. Critics said Facebook should get “informed consent” for a study like this — asking people if they’re okay being in a study and then telling them what was being studied afterwards. Defenders said, “Hey, the Newsfeed gets manipulated all the time. What’s the big deal?” Critics and defenders alike pointed out that Facebook’s “permission” came from its Data Use Policy which among its thousands of words informs people that their information might be used for “internal operations,” including “research.” However, we were all relying on what Facebook’s data policy says now. In January 2012, the policy did not say anything about users potentially being guinea pigs made to have a crappy day for science, nor that “research” is something that might happen on the platform.

Four months after this study happened, in May 2012, Facebook made changes to its data use policy, and that’s when it introduced this line about how it might use your information: “For internal operations, including troubleshooting, data analysis, testing, research and service improvement.”"