Trusting big health data

Angela Villanueva
Baylor College of Medicine Blogs
Originally posted November 10, 2017

Here is an excerpt:

Potentially exacerbating this mistrust is a sense of loss of privacy and absence of control over information describing us and our habits. Given the extent of current “everyday” data collection and sharing for marketing and other purposes, this lack of trust is not unreasonable.

Health information sharing makes many people uneasy, particularly because of the potential harms such as insurance discrimination or stigmatization. Data breaches like the recent Equifax hack may add to these concerns and affect people’s willingness to share their health data.

But it is critical to encourage members of all groups to participate in big data initiatives focused on health in order for all to benefit from the resulting discoveries. My colleagues and I recently published an article detailing eight guiding principles for successful data sharing; building trust is one of them.

Here is the article.

Don’t Nudge Me: The Limits of Behavioral Economics in Medicine

Aaron E. Carroll
The New York Times - The Upshot
Originally posted November 6, 2017

Here is an excerpt:

But those excited about the potential of behavioral economics should keep in mind the results of a recent study. It pulled out all the stops in trying to get patients who had a heart attack to be more compliant in taking their medication. (Patients’ adherence at such a time is surprisingly low, even though it makes a big difference in outcomes, so this is a major problem.)

Researchers randomly assigned more than 1,500 people to one of two groups. All had recently had heart attacks. One group received the usual care. The other received special electronic pill bottles that monitored patients’ use of medication. Those patients who took their drugs were entered into a lottery in which they had a 20 percent chance to receive $5 and a 1 percent chance to win $50 every day for a year.

That’s not all. The lottery group members could also sign up to have a friend or family member automatically be notified if they didn’t take their pills so that they could receive social support. They were given access to special social work resources. There was even a staff engagement adviser whose specific duty was providing close monitoring and feedback, and who would remind patients about the importance of adherence.

This was a kitchen-sink approach. It involved direct financial incentives, social support nudges, health care system resources and significant clinical management. It failed.

The article is here.

Social Media Channels in Health Care Research and Rising Ethical Issues

Samy A. Azer
AMA Journal of Ethics. November 2017, Volume 19, Number 11: 1061-1069.

Abstract

Social media channels such as Twitter, Facebook, and LinkedIn have been used as tools in health care research, opening new horizons for research on health-related topics (e.g., the use of mobile social networking in weight loss programs). While there have been efforts to develop ethical guidelines for internet-related research, researchers still face unresolved ethical challenges. This article investigates some of the risks inherent in social media research and discusses how researchers should handle challenges related to confidentiality, privacy, and consent when social media tools are used in health-related research.

Here is an excerpt:

Social Media Websites and Ethical Challenges

While one may argue that regardless of the design and purpose of social media websites (channels) all information conveyed through social media should be considered public and therefore usable in research, such a generalization is incorrect and does not reflect the principles we follow in other types of research. The distinction between public and private online spaces can blur, and in some situations it is difficult to draw a line. Moreover, as discussed later, social media channels operate under different rules than research, and thus using these tools in research may raise a number of ethical concerns, particularly in health-related research. Good research practice fortifies high-quality science; ethical standards, including integrity; and the professionalism of those conducting the research. Importantly, it ensures the confidentiality and privacy of information collected from individuals participating in the research. Yet, in social media research, there are challenges to ensuring confidentiality, privacy, and informed consent.

The article is here.

Suicide Is Not The Same As "Physician Aid In Dying"

American Association of Suicidology
Suicide Is Not The Same As "Physician Aid In Dying"
Approved October 30, 2017

Executive summary 

The American Association of Suicidology recognizes that the practice of physician aid in dying, also called physician assisted suicide, Death with Dignity, and medical aid in dying, is distinct from the behavior that has been traditionally and ordinarily described as “suicide,” the tragic event our organization works so hard to prevent. Although there may be overlap between the two categories, legal physician assisted deaths should not be considered to be cases of suicide and are therefore a matter outside the central focus of the AAS.

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Conclusion 

In general, suicide and physician aid in dying are conceptually, medically, and legally different phenomena, with an undetermined amount of overlap between these two categories. The American Association of Suicidology is dedicated to preventing suicide, but this has no bearing on the reflective, anticipated death a physician may legally help a dying patient facilitate, whether called physician-assisted suicide, Death with Dignity, physician assisted dying, or medical aid in dying. In fact, we believe that the term “physician-assisted suicide” in itself constitutes a critical reason why these distinct death categories are so often conflated, and should be deleted from use. Such deaths should not be considered to be cases of suicide and are therefore a matter outside the central focus of the AAS.

The full document is here.

The Wisdom in Virtue: Pursuit of Virtue Predicts Wise Reasoning About Personal Conflicts

Alex C. Huynh, Harrison Oakes, Garrett R. Shay, & Ian McGregor
Psychological Science
Article first published online: October 3, 2017

Abstract

Most people can reason relatively wisely about others’ social conflicts, but often struggle to do so about their own (i.e., Solomon’s paradox). We suggest that true wisdom should involve the ability to reason wisely about both others’ and one’s own social conflicts, and we investigated the pursuit of virtue as a construct that predicts this broader capacity for wisdom. Results across two studies support prior findings regarding Solomon’s paradox: Participants (N = 623) more strongly endorsed wise-reasoning strategies (e.g., intellectual humility, adopting an outsider’s perspective) for resolving other people’s social conflicts than for resolving their own. The pursuit of virtue (e.g., pursuing personal ideals and contributing to other people) moderated this effect of conflict type. In both studies, greater endorsement of the pursuit of virtue was associated with greater endorsement of wise-reasoning strategies for one’s own personal conflicts; as a result, participants who highly endorsed the pursuit of virtue endorsed wise-reasoning strategies at similar levels for resolving their own social conflicts and resolving other people’s social conflicts. Implications of these results and underlying mechanisms are explored and discussed.

Here is an excerpt:

We propose that the litmus test for wise character is whether one can reason wisely about one’s own social conflicts. As did the biblical King Solomon, people tend to reason more wisely about others’ social conflicts than their own (i.e., Solomon’s paradox; Grossmann & Kross, 2014, see also Mickler & Staudinger, 2008, for a discussion of personal vs. general wisdom). Personal conflicts impede wise reasoning because people are more likely to immerse themselves in their own perspective and emotions, relegating other perspectives out of awareness, and increasing certainty regarding preferred perspectives (Kross & Grossmann, 2012; McGregor, Zanna, Holmes, & Spencer, 2001). In contrast, reasoning about other people’s conflicts facilitates wise reasoning through the adoption of different viewpoints and the avoidance of sociocognitive biases (e.g., poor recognition of one’s own shortcomings—e.g., Pronin, Olivola, & Kennedy, 2008). In the present research, we investigated whether virtuous motives facilitate wisdom about one’s own conflicts, enabling one to pass the litmus test for wise character.

The article is here.

Rather than being free of values, good science is transparent about them

Kevin Elliott
The Conversation
Originally published November 8, 2017

Scientists these days face a conundrum. As Americans are buffeted by accounts of fake news, alternative facts and deceptive social media campaigns, how can researchers and their scientific expertise contribute meaningfully to the conversation?

There is a common perception that science is a matter of hard facts and that it can and should remain insulated from the social and political interests that permeate the rest of society. Nevertheless, many historians, philosophers and sociologists who study the practice of science have come to the conclusion that trying to kick values out of science risks throwing the baby out with the bathwater.

Ethical and social values – like the desire to promote economic development, public health or environmental protection – often play integral roles in scientific research. By acknowledging this, scientists might seem to give away their authority as a defense against the flood of misleading, inaccurate information that surrounds us. But I argue in my book “A Tapestry of Values: An Introduction to Values in Science” that if scientists take appropriate steps to manage and communicate about their values, they can promote a more realistic view of science as both value-laden and reliable.

The article is here.

Trump presidency spurs cottage industry of ethics watchdogs

Fredreka Schouten
USA Today
Originally posted November 23, 2017

Here is an excerpt:

The groups pursuing Trump say they are trying to keep close tabs on a president who is bucking ethical norms by retaining ownership of his businesses and abruptly firing FBI Director James Comey, who was leading the agency’s probe into the Russian government involvement in last year’s election.

“We are in a crisis of ethics,” said Noah Bookbinder, the executive director of Citizens for Responsibility and Ethics in Washington or CREW. “There are ethics a
nd conflicts and influence problems in this administration unlike any we have ever seen. And it began with the president’s decision not to divest from his businesses.”

White House officials this week contended that Trump is operating ethically. As an example, they point to his signing of a far-reaching ethics policy that, among other things, tries to slow the revolving door between government and industry by imposing a five-year cooling-off period before former government appointees can work as lobbyists.

“An organized onslaught from partisan groups committed to undermining the President’s agenda can’t change the fact that he has elevated ethics within this administration,” White House spokesman Raj Shah said in a statement.

The information is here.

Navigating Political Talk at Work

David W. Ballard
Harvard Business Review
Originally posted March 2, 2017

Here is an excerpt:

Managers should recognize that the current political environment could be having an effect on people, especially if they’re talking about it in the office. Be aware of employees’ stress levels, share information about benefits and resources that are available to help support them, and encourage appropriate use of your company’s employee assistance program, mental health benefits, flexible work arrangements, and workplace wellness activities that can help people stay healthy and functioning at their best.

Senior leaders and supervisors can communicate a powerful message by modeling the behavior and actions they’re trying to promote in the organization. By demonstrating civility and respect, actively using available support resources, participating in organizational activities, and managing their own stress levels in healthy ways, business leaders can back their words with actions that show they are serious about creating a healthy work environment.

Focusing on common goals and shared values is another way to bring people together despite their differences. As a manager, set clear goals for your team and focus people on working together toward common objectives. When political turmoil is creating tension and distraction, focusing on the work and accomplishing something together may be a welcome reprieve.

Finally, step in if things get too heated. If the current political climate is negatively affecting an employee’s job performance, address the issue before it creates a bigger problem. Provide the necessary feedback, work with the employee to create a plan, and point them to available resources that might help. When tensions turn into conflicts between coworkers, counsel employees on any relevant policies related to harassment or incivility, help them find ways to work together, and involve human resources as needed.

The article is here.

Tiny human brain organoids implanted into rodents, triggering ethical concerns

Sharon Begley
STAT News
Originally posted November 6, 2017

Here is an excerpt:

He and his colleagues discussed the ethics of implanting human brain organoids into rats, including whether the animals might become too human. “Some of what people warn about is still science fiction,” he said. “Right now, the organoids are so crude we probably decrease” the rats’ brain function.

Ethicists argue that “not a problem now” doesn’t mean “never a problem.” One concern raised by the human brain organoid implants “is that functional integration [of the organoids] into the central nervous system of animals can in principle alter an animal’s behavior or needs,” said bioethicist Jonathan Kimmelman of McGill University in Montreal. “The task, then, is to carefully monitor if such alterations occur.” If the human implant gives an animal “increased sentience or mental capacities,” he added, it might suffer more.

Would it feel like a human trapped in a rodent’s body? Because both the Salk and Penn experiments used adult rodents, their brains were no longer developing, unlike the case if implants had been done with fetal rodent brains. “It’s hard to imagine how human-like cognitive capacities, like consciousness, could emerge under such circumstances,” Kimmelman said, referring to implants into an adult rodent brain. Chen agreed: He said his experiment “carries much less risk of creating animals with greater ‘brain power’ than normal” because the human organoid goes into “a specific region of already developed brain.”

The belief that consciousness is off the table is in fact the subject of debate. An organoid would need to be much more advanced than today’s to experience consciousness, said the Allen Institute’s Koch, including having dense neural connections, distinct layers, and other neuro-architecture. But if those and other advances occur, he said, “then the question is very germane: Does this piece of cortex feel something?” Asked whether brain organoids can achieve consciousness without sensory organs and other means of perceiving the world, Koch said it would experience something different than what people and other animals do: “It raises the question, what is it conscious of?”

The article is here.