Private UK health data donated for medical research shared with insurance companies

Shanti Das

The Guardian

Originally poste 12 Nov 23

Sensitive health information donated for medical research by half a million UK citizens has been shared with insurance companies despite a pledge that it would not be.

An Observer investigation has found that UK Biobank opened up its vast biomedical database to insurance sector firms several times between 2020 and 2023. The data was provided to insurance consultancy and tech firms for projects to create digital tools that help insurers predict a person’s risk of getting a chronic disease. The findings have raised concerns among geneticists, data privacy experts and campaigners over vetting and ethical checks at Biobank.

Set up in 2006 to help researchers investigating diseases, the database contains millions of blood, saliva and urine samples, collected regularly from about 500,000 adult volunteers – along with medical records, scans, wearable device data and lifestyle information.

Approved researchers around the world can pay £3,000 to £9,000 to access records ranging from medical history and lifestyle information to whole genome sequencing data. The resulting research has yielded major medical discoveries and led to Biobank being considered a “jewel in the crown” of British science.

Biobank said it strictly guarded access to its data, only allowing access by bona fide researchers for health-related projects in the public interest. It said this included researchers of all stripes, whether employed by academic, charitable or commercial organisations – including insurance companies – and that “information about data sharing was clearly set out to participants at the point of recruitment and the initial assessment”.

The info is here.

Here is my summary:

Private health data donated by over half a million UK citizens for medical research has been shared with insurance companies, despite a pledge that it would not be used for this purpose. The data, which includes genetic information, medical diagnoses, and lifestyle factors, has been used to develop digital tools that help insurers predict a person's risk of getting a chronic disease. This raises concerns about the privacy and security of sensitive health data, as well as the potential for insurance companies to use the data to discriminate against people with certain health conditions.

How important is the end of humanity? Lay people prioritize extinction prevention but not above all other societal issues

Coleman, M. B., Caviola, L., et al.

(2023, October 21). 

https://doi.org/10.31234/osf.io/qn7k5

Abstract

Human extinction would mean the deaths of eight billion people and the end of humanity’s achievements, culture, and future potential. On several ethical views, extinction would be a terrible outcome. How do people think about human extinction? And how much do they prioritize preventing extinction over other societal issues? Across six empirical studies (N = 2,541; U.S. and China) we find that people consider extinction prevention a global priority and deserving of greatly increased societal resources. However, despite estimating the likelihood of human extinction to be 5% this century (U.S. median), people believe the odds would need to be around 30% for it to be the very highest priority. Consequently, people consider extinction prevention to be only one among several important societal issues. People’s judgments about the relative importance of extinction prevention appear relatively fixed and are hard to change by reason-based interventions.

The research is here.

Here is my take:

The study found that lay people rated extinction prevention as more important than addressing climate change, poverty, and inequality. However, they rated extinction prevention as less important than promoting peace and security, and ensuring the well-being of future generations.

The study's authors suggest that these findings may be due to the fact that lay people perceive extinction prevention as a more existential threat than other societal issues. They also suggest that lay people may be more likely to prioritize extinction prevention if they believe that it is achievable.

Key findings:

• Lay people prioritize extinction prevention, but not above all other societal issues.
• Lay people rated extinction prevention as more important than addressing climate change, poverty, and inequality.
• Lay people rated extinction prevention as less important than promoting peace and security, and ensuring the well-being of future generations.
• The study's authors suggest that these findings may be due to the fact that lay people perceive extinction prevention as a more existential threat than other societal issues.

Prosociality should be a public health priority

Kubzansky, L.D., Epel, E.S. & Davidson, R.J. 

Nat Hum Behav (2023).

https://doi.org/10.1038/s41562-023-01717-3

Standfirst:

Hopelessness and despair threaten health and longevity. We urgently need strategies to counteract these effects and improve population health. Prosociality contributes to better mental and physical health for individuals, and for the communities in which they live. We propose that prosociality should be a public health priority.

Comment:

The COVID-19 pandemic produced high levels of stress, loneliness, and mental health problems, magnifying global trends in health disparities.1 Hopelessness and despair are growing problems particularly in the U.S. The sharp increase in rates of poor mental health is problematic in its own right, but poor mental health also contributes to greater morbidity and mortality. Without action, we will see steep declines in global population health and related costs to society. An approach that is “more of the same” is insufficient to stem the cascading effects of emotional ill-being. Something new is desperately needed.

To this point, recent work called on the discipline of psychiatry to contribute more meaningfully to the deaths of despair framework (i.e., conceptualizing rises in suicide, drug poisoning and alcoholic liver disease as due to misery of difficult social and economic circumstances).2 Recognizing that simply expanding mental health services cannot address the problem, the authors noted the importance of population-level prevention and targeting macro-level causes for intervention. This requires identifying upstream factors causally related to these deaths. However, factors explaining population health trends are poorly delineated and focus on risks and deficits (e.g., adverse childhood experiences, unemployment). A ‘deficit-based’ approach has limits as the absence of a risk factor does not inevitably indicate presence of a protective asset; we also need an ‘assetbased’ approach to understanding more comprehensively the forces that shape good health and buffer harmful effects of stress and adversity.

A pdf is here.

My take:

Prosociality refers to positive behaviors and beliefs that benefit others. It is a broad concept that encompasses many different qualities, such as altruism, trust, reciprocity, compassion, and empathy.

Research has shown that prosociality has a number of benefits for both individuals and communities. For individuals, prosociality can lead to improved mental and physical health, greater life satisfaction, and stronger social relationships. For communities, prosociality can lead to increased trust and cooperation, reduced crime rates, and improved overall well-being.

The authors of the article argue that prosociality should be a public health priority. They point out that prosociality can help to address a number of major public health challenges, such as loneliness, social isolation, and mental illness. They also argue that prosociality can help to build stronger communities and create a more just and equitable society.

Ignorance by Choice: A Meta-Analytic Review of the Underlying Motives of Willful Ignorance and Its Consequences

Vu, L., Soraperra, I., Leib, M., et al. (2023).

Psychological Bulletin, 149(9-10), 611–635.

https://doi.org/10.1037/bul0000398

Abstract

People sometimes avoid information about the impact of their actions as an excuse to be selfish. Such “willful ignorance” reduces altruistic behavior and has detrimental effects in many consumer and organizational contexts. We report the first meta-analysis on willful ignorance, testing the robustness of its impact on altruistic behavior and examining its underlying motives. We analyze 33,603 decisions made by 6,531 participants in 56 different treatment effects, all employing variations of an experimental paradigm assessing willful ignorance. Meta-analytic results reveal that 40% of participants avoid easily obtainable information about the consequences of their actions on others, leading to a 15.6-percentage point decrease in altruistic behavior compared to when information is provided. We discuss the motives behind willful ignorance and provide evidence consistent with excuse-seeking behaviors to maintain a positive self-image. We investigate the moderators of willful ignorance and address the theoretical, methodological, and practical implications of our findings on who engages in willful ignorance, as well as when and why.

Public Significance Statement

We present the first meta-analysis on willful ignorance—when individuals avoid information about the negative consequences of their actions to maximize personal outcomes—covering 33,603 decisions made by 6,531 participants across 56 treatment effects. Results demonstrate that the ability to avoid such information decreases altruistic behavior, and that seemingly altruistic behavior may not reflect a true concern for others.

The research is here.

Key findings of the meta-analysis include:

Prevalence of Willful Ignorance: Approximately 40% of participants in the analyzed studies chose to avoid learning about the negative impact of their actions on others.

Impact on Altruism: Willful ignorance significantly reduces altruistic behavior. When provided with information about the consequences of their actions, participants were 15.6 percentage points more likely to engage in altruistic acts compared to those who chose to remain ignorant.

Motives for Willful Ignorance: The study suggests that willful ignorance may serve as a self-protective mechanism to maintain a positive self-image. By avoiding information about the harm caused by their actions, individuals can protect their self-perception as moral and ethical beings.

One of the top concerns is moral decline of today’s youth, survey

Valerie Pritchett

27ABC News

Originally published 9 NOV 23

Yes, I do TV interviews as well.  The video plays after the commercial.

Discordant benevolence: How and why people help others in the face of conflicting values.

Cowan, S. K., Bruce, T. C., et al. (2022).

Science Advances, 8(7).

https://doi.org/10.1126/sciadv.abj5851

Abstract

What happens when a request for help from friends or family members invokes conflicting values? In answering this question, we integrate and extend two literatures: support provision within social networks and moral decision-making. We examine the willingness of Americans who deem abortion immoral to help a close friend or family member seeking one. Using data from the General Social Survey and 74 in-depth interviews from the National Abortion Attitudes Study, we find that a substantial minority of Americans morally opposed to abortion would enact what we call discordant benevolence: providing help when doing so conflicts with personal values. People negotiate discordant benevolence by discriminating among types of help and by exercising commiseration, exemption, or discretion. This endeavor reveals both how personal values affect social support processes and how the nature of interaction shapes outcomes of moral decision-making.

Here is my summary:

Using data from the General Social Survey and 74 in-depth interviews from the National Abortion Attitudes Study, the authors find that a substantial minority of Americans morally opposed to abortion would enact discordant benevolence. They also find that people negotiate discordant benevolence by discriminating among types of help and by exercising commiseration, exemption, or discretion.

Commiseration involves understanding and sharing the other person's perspective, even if one does not agree with it. Exemption involves excusing oneself from helping, perhaps by claiming ignorance or lack of resources. Discretion involves helping in a way that minimizes the conflict with one's own values, such as by providing emotional support or practical assistance but not financial assistance.

The authors argue that discordant benevolence is a complex phenomenon that reflects the interplay of personal values, social relationships, and moral decision-making. They conclude that discordant benevolence is a significant form of social support, even in cases where it is motivated by conflicting values.

In other words, the research suggests that people are willing to help others in need, even if it means violating their own personal values. This is because people also value social relationships and helping others. They may do this by discriminating among types of help or by exercising commiseration, exemption, or discretion.

Attitudes in an interpersonal context: Psychological safety as a route to attitude change

Itzchakov, G., & DeMarree, K. G. (2022).

Frontiers in Psychology, 13.

https://doi.org/10.3389/fpsyg.2022.932413

Abstract

Interpersonal contexts can be complex because they can involve two or more people who are interdependent, each of whom is pursuing both individual and shared goals. Interactions consist of individual and joint behaviors that evolve dynamically over time. Interactions are likely to affect people’s attitudes because the interpersonal context gives conversation partners a great deal of opportunity to intentionally or unintentionally influence each other. However, despite the importance of attitudes and attitude change in interpersonal interactions, this topic remains understudied. To shed light on the importance of this topic. We briefly review the features of interpersonal contexts and build a case that understanding people’s sense of psychological safety is key to understanding interpersonal influences on people’s attitudes. Specifically, feeling psychologically safe can make individuals more open-minded, increase reflective introspection, and decrease defensive processing. Psychological safety impacts how individuals think, make sense of their social world, and process attitude-relevant information. These processes can result in attitude change, even without any attempt at persuasion. We review the literature on interpersonal threats, receiving psychological safety, providing psychological safety, and interpersonal dynamics. We then detail the shortcomings of current approaches, highlight unanswered questions, and suggest avenues for future research that can contribute in developing this field.

The info is here.

This is part of the reason psychotherapy works.

My summary:

Attitudes are evaluations of people, objects, or ideas, and they can be influenced by a variety of factors, including interpersonal interactions. Psychological safety is a climate in which individuals feel safe to take risks, make mistakes, and be vulnerable. When people feel psychologically safe, they are more likely to express their true thoughts and feelings, which can lead to attitude change.

There are a number of ways that psychological safety can promote attitude change. First, feeling psychologically safe can make people more open-minded. When people feel safe, they are more likely to consider new information and perspectives, even if they challenge their existing beliefs. Second, psychological safety can increase reflective introspection. When people feel safe to be vulnerable, they are more likely to reflect on their own thoughts and feelings, which can lead to deeper insights and changes in attitude. Third, psychological safety can decrease defensive processing. When people feel safe, they are less likely to feel threatened by new information or perspectives, which makes them more open to considering them.

Research has shown that psychological safety can lead to attitude change in a variety of interpersonal contexts, including romantic relationships, friendships, and work teams. For example, one study found that couples who felt psychologically safe in their relationships were more likely to change their attitudes towards each other over time. Another study found that employees who felt psychologically safe in their teams were more likely to change their attitudes towards diversity and inclusion.

Moral Future-Thinking: Does the Moral Circle Stand the Test of Time?

Law, K. F., Syropoulos, S., et al. (2023, August 10). 

PsyArXiv

https://doi.org/10.31234/osf.io/c75ny

Abstract

The long-term collective welfare of humanity may lie in the hands of those who are presently living. But do people normatively include future generations in their moral circles? Across four studies conducted on Prolific Academic (N Total=823), we find evidence for a progressive decline in the subjective moral standing of future generations, demonstrating decreasing perceived moral obligation, moral concern, and prosocial intentions towards other people with increasing temporal distance. While participants generally tend to display present-oriented moral preferences, we also reveal individual differences that mitigate this tendency and predict pro-future outcomes, including individual variation in longtermism beliefs and the vividness of one’s imagination. Our studies reconcile conflicting evidence in the extant literature on moral judgment and future-thinking, shed light on the role of temporal distance in moral circle expansion, and offer practical implications for better valuing and safeguarding the shared future of humanity.

Here's my summary:

This research investigates whether people normatively include future generations in their moral circles. The authors conducted four studies with a total of 823 participants, and found evidence for a progressive decline in the subjective moral standing of future generations with increasing temporal distance. This suggests that people generally tend to display present-oriented moral preferences.

However, the authors also found individual differences that mitigate this tendency and predict pro-future outcomes. These factors include individual variation in longtermism beliefs and the vividness of one's imagination. The authors also found that people are more likely to include future generations in their moral circles when they are primed to think about them or when they are asked to consider the long-term consequences of their actions.

The authors' findings reconcile conflicting evidence in the extant literature on moral judgment and future-thinking. They also shed light on the role of temporal distance in moral circle expansion and offer practical implications for better valuing and safeguarding the shared future of humanity.

Overall, the research paper provides evidence that people generally tend to prioritize the present over the future when making moral judgments. However, the authors also identify individual factors and contextual conditions that can promote moral future-thinking. These findings could be used to develop interventions that encourage people to consider the long-term consequences of their actions and to take steps to protect the well-being of future generations.

Everything you need to know about artificial wombs

Cassandra Willyard

MIT Technology Review

Originally posted 29 SEPT 23

Here is an excerpt:

What is an artificial womb?

An artificial womb is an experimental medical device intended to provide a womblike environment for extremely premature infants. In most of the technologies, the infant would float in a clear “biobag,” surrounded by fluid. The idea is that preemies could spend a few weeks continuing to develop in this device after birth, so that “when they’re transitioned from the device, they’re more capable of surviving and having fewer complications with conventional treatment,” says George Mychaliska, a pediatric surgeon at the University of Michigan.

One of the main limiting factors for survival in extremely premature babies is lung development. Rather than breathing air, babies in an artificial womb would have their lungs filled with lab-made amniotic fluid, that mimics the amniotic fluid they would have hadjust like they would in utero. Neonatologists would insert tubes into blood vessels in the umbilical cord so that the infant’s blood could cycle through an artificial lung to pick up oxygen. 

The device closest to being ready to be tested in humans, called the EXTrauterine Environment for Newborn Development, or EXTEND, encases the baby in a container filled with lab-made amniotic fluid. It was invented by Alan Flake and Marcus Davey at the Children’s Hospital of Philadelphia and is being developed by Vitara Biomedical.

The info is here.

Here is my take:

Artificial wombs are experimental medical devices that aim to provide a womb-like environment for extremely premature infants. The technology is still in its early stages of development, but it has the potential to save the lives of many babies who would otherwise not survive.

Overall, artificial wombs are a promising new technology with the potential to revolutionize the care of premature infants. However, more research is needed to fully understand the risks and benefits of the technology before it can be widely used.

Here are some additional ethical concerns that have been raised about artificial wombs:

• The potential for artificial wombs to be used to create designer babies or to prolong the lives of fetuses with severe disabilities.
• The potential for artificial wombs to be used to exploit or traffick babies.
• The potential for artificial wombs to exacerbate existing social and economic inequalities.

It is important to have a public conversation about these ethical concerns before artificial wombs become widely available. We need to develop clear guidelines for how the technology should be used and ensure that it is used in a way that benefits all of society.