The Answer to a COVID-19 Vaccine May Lie in Our Genes, But ...

Ifeoma Ajunwa & Forrest Briscoe
Scientific American
Originally posted 13 May 2020

Here is an excerpt:

Although the rationale for expanded genetic testing is obviously meant for the greater good, such testing could also bring with it a host of privacy and economic harms. In the past, genetic testing has also been associated with employment discrimination. Even before the current crisis, companies like 23andMe and Ancestry assembled and started operating their own private long-term large-scale databases of U.S. citizens’ genetic and health data. 23andMe and Ancestry recently announced they would use their databases to identify genetic factors that predict COVID-19 susceptibility.

Other companies are growing similar databases, for a range of purposes. And the NIH’s AllofUs program is constructing a genetic database, owned by the federal government, in which data from one million people will be used to study various diseases. These new developments indicate an urgent need for appropriate genetic data governance.

Leaders from the biomedical research community recently proposed a voluntary code of conduct for organizations constructing and sharing genetic databases. We believe that the public has a right to understand the risks of genetic databases and a right to have a say in how those databases will be governed. To ascertain public expectations about genetic data governance, we surveyed over two thousand (n=2,020) individuals who altogether are representative of the general U.S. population. After educating respondents about the key benefits and risks associated with DNA databases—using information from recent mainstream news reports—we asked how willing they would be to provide their DNA data for such a database.

The info is here.

The Voluntariness of Voluntary Consent: Consent Searches and the Psychology of Compliance

Sommers, Roseanna and Bohns, Vanessa K.
Yale Law Journal, Vol. 128, No. 7, 2019. 
Available at SSRN: https://ssrn.com/abstract=3369844

Abstract

Consent-based searches are by far the most ubiquitous form of search undertaken by police. A key legal inquiry in these cases is whether consent was granted voluntarily. This Essay suggests that fact finders’ assessments of voluntariness are likely to be impaired by a systematic bias in social perception. Fact finders are likely to under appreciate the degree to which suspects feel pressure to comply with police officers’ requests to perform searches.

In two preregistered laboratory studies, we approached a total of 209 participants (“Experiencers”) with a highly intrusive request: to unlock their password-protected smartphones and hand them over to an experimenter to search through while they waited in another room. A separate 194 participants (“Forecasters”) were brought into the lab and asked whether a reasonable person would agree to the same request if hypothetically approached by the same researcher. Both groups then reported how free they felt, or would feel, to refuse the request.

Study 1 found that whereas most Forecasters believed a reasonable person would refuse the experimenter’s request, most Experiencers — 100 out of 103 people — promptly unlocked their phones and handed them over. Moreover, Experiencers reported feeling significantly less free to refuse than did Forecasters contemplating the same situation hypothetically.

Study 2 tested an intervention modeled after a commonly proposed reform of consent searches, in which the experimenter explicitly advises participants that they have the right to with- hold consent. We found that this advisory did not significantly reduce compliance rates or make Experiencers feel more free to say no. At the same time, the gap between Experiencers and Forecasters remained significant.

These findings suggest that decision makers judging the voluntariness of consent consistently underestimate the pressure to comply with intrusive requests. This is problematic because it indicates that a key justification for suspicionless consent searches — that they are voluntary — relies on an assessment that is subject to bias. The results thus provide support to critics who would like to see consent searches banned or curtailed, as they have been in several states.

The results also suggest that a popular reform proposal — requiring police to advise citizens of their right to refuse consent — may have little effect. This corroborates previous observational studies, which find negligible effects of Miranda warnings on confession rates among interrogees, and little change in rates of consent once police start notifying motorists of their right to refuse vehicle searches. We suggest that these warnings are ineffective because they fail to address the psychology of compliance. The reason people comply with police, we contend, is social, not informational. The social demands of police-citizen interactions persist even when people are informed of their rights. It is time to abandon the myth that notifying people of their rights makes them feel empowered to exercise those rights.

A Proposal for a Scientifically-Informed and Instrumentalist Account of Free Will and Voluntary Action

Eric Racine
Frontiers in Psychology, 17 May 2017

Here is an excerpt:

From the perspective of applied ethics and social behavior, voluntariness is a key dimension in the understanding of autonomous decisions and actions as well as our responsibility toward and ownership of these decisions and actions (Dworkin, 1988; Wegner, 2002). Autonomous decisions and actions imply that the agent is initiating them according to his or her own wishes and that the person is free to do so (i.e., not under direct or indirect forms of coercion that would imperil the existence of such an ability). Accordingly, in applied ethics, voluntariness commonly refers to “the degree that [the moral agent] wills the action without being under the control of another's influence” (Beauchamp and Childress, 2001). Indeed, if moral agents have a jeopardized ability, or even lack the ability to initiate actions freely, then neither can they be faulted for their own actions (responsibility) nor encouraged to undertake actions on the premise of their expression of their own preferences (autonomy; Felsen and Reiner, 2011; Castelo et al., 2012). The concept of FW commonly captures a basic form of agency and a responsibility associated with this ability to self-control and initiate voluntary action (Roskies, 2006; Brass et al., 2013). Accordingly, in this paper, FW designates primarily a basic ability to envision options and choose between them such that the will or volition of the person is considered to be free.

The article is here.

Editor's note: The concept of free will is a main concern in psychotherapy.  How autonomous is your patient's behavior?

Are volunteer study patients making a free choice?

Michael Kirsch
KevinMD.org
Originally published March 13, 2016

There was a tragedy in France recently: Innocent French citizens were taken down by a profession whose mission is to heal and comfort.  A medical clinical trial careened off the rails and crashed.  Were these volunteer study patients properly informed?  Are medical study patients here in the U.S. truly making a free choice?

From time to time, friends, patients, and relatives ask my advice if they should participate in a medical experiment.  While I am a doctor, I usually say no.  And, once I explain to them the realities of medical research, they usually say no also.

The article is here.

Responsibility and Blame in the Clinic

By Hanna Pickard
Flickers of Freedom
Originally posted January 17, 2014

Here is an excerpt:

But we can really help these patients if we adopt a stance that I call “Responsibility without Blame”. Here’s what this means. The problem behaviour is voluntary. Patients with PD are not mentally ill and they know as well as most of us do what they are doing when they act. They have choice and control over their behaviour at least in the minimal sense that they can refrain – which they will often do if sufficiently motivated.  That does not mean that refraining is easy.  Here a little more background is important: PD is associated with extreme early psycho-socio-economic adversity. Most patients come from dysfunctional families or they may have been in institutional care. Rates of childhood sexual, emotional, and physical abuse or neglect are very high. Socio-economic status is low. Additional associated factors include war, migration, and poverty. Problem behaviour is often a learned, habitual way of coping with the distress caused by such adversity, and patients may have hitherto lacked decent opportunities to learn alternative, better ways of coping. So, until the underlying distress is addressed and new ways of coping are learned, restraint is hard.

The entire blog post is here.