The more you know, the less you want to know

Posted by Franz

How A Co-Worker’s Breast Cancer Diagnosis Affects Colleagues
by Shankar Vedantam
August 13, 2014
http://www.npr.org/2014/08/13/340005026/how-a-co-worker-s-breast-cancer-diagnosis-affects-colleagues

When a woman at work experiences breast cancer, does that make her colleagues more likely to get mammograms and be proactive about their own health?

psychologists and social scientists talk about this idea of information aversion – the idea that maybe you don’t want to find out about some really bad news because of the way it makes you feel.

INSKEEP: The more you know, the less you want to know.

Ignorance is bliss

Posted by Franz

Why We Think Ignorance Is Bliss, Even When It Hurts Our Health
by Shankar Vedantam
July 28, 2014
http://www.npr.org/blogs/health/2014/07/28/333945706/why-we-think-ignorance-is-bliss-even-when-it-hurts-our-health

Medical tests are rarely a pleasant experience, especially if you’re worried that something could be seriously wrong. That’s true even though we know that regular screenings and tests often help doctors catch issues early.

But of course, humans don’t always behave rationally.
Sometimes people will go to great lengths to avoid hearing bad news.
Social scientists call this sort of behavior information aversion, or the ostrich effect (based on the old myth that ostriches bury their heads in the sand when they’re scared). And it can have important implications for our health, researchers say.

… It has two forms, one is unpleasant and the other is even worse.

original article:
Fantasy and Dread: The Demand for Information and the Consumption Utility of the Future
Ananda R. Ganguly, et al.
Claremont McKenna College – Robert Day School of Economics and Finance
http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2370983
Understanding the properties of intrinsic information preference is important for predicting behavior in many domains including finance and health. We present evidence that intrinsic demand for information about the future is increasing in expected future consumption utility. In the first experiment subjects may resolve a lottery now or later. The information is useless for decision making but the larger the reward, the more likely subjects are to pay to resolve the lottery early. In the second experiment subjects may pay to avoid being tested for HSV-1 and the more highly feared HSV-2. Subjects are three times more likely to avoid testing for HSV-2, suggesting that more aversive outcomes lead to more information avoidance. We also find that intrinsic information demand is negatively correlated with positive affect and ambiguity aversion.

Keywords:

anticipatory utility,
information avoidance,
positive affect,
information-consumption complementarity,
preference for presence

cf: https://franzcalvo.wordpress.com/2014/07/13/the-right-not-to-know-genetic-risk-information

information123

The “right not to know” genetic risk information

Posted by Franz

ACMG Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing
American College of Medical Genetics and Genomics
21 March 2013
http://www.acmg.net/docs/ACMG_Releases_Highly-Anticipated_Recommendations_on_Incidental_Findings_in_Clinical_Exome_and_Genome_Sequencing.pdf

Keywords: secondary findings, incidental findings, genome, genomic medicine, personalized medicine, whole-exome, whole-genome, sequencing

For example, sequencing could have areas of diminished or absent coverage in the genes examined for incidental findings that would be filled in by Sanger sequencing or other supplementary approaches if the gene were being evaluated for a primary indication.
In addition, while genome sequencing can provide increasingly reliable information on copy number variation and translocations, exome sequencing is currently less reliable, and neither technology can be used to measure tandem repeat size accurately.
For these reasons, we did not include some disorders where structural variants (e.g., translocations and inversions), repeat expansions, or copy number variations are the primary cause, and have not recommended that laboratories utilize orthogonal techniques to search for these variants in the genes named in the minimum list.

… Given these recommendations, the Working Group was concerned that a negative incidental findings report could be misconstrued by clinicians or patients as an assurance of the absence of a pathogenic variant, which is not always the case.

there is no single database currently available that represents an accurately curated compendium of known pathogenic variants, nor is there an automated algorithm to identify all novel variants meeting criteria for pathogenicity.

We recognize that this may be seen to violate existing ethical norms regarding the patient’s autonomy and “right not to know” genetic risk information.
However, in selecting a minimal list that is weighted toward conditions where prevalence may be high and intervention may be possible, we felt that clinicians and laboratory personnel have a fiduciary duty to prevent harm by warning patients and their families about certain incidental findings and that this principle supersedes concerns about autonomy, …

journalistic version:
http://news.sciencemag.org/health/2013/03/patients-should-get-dna-information-report-recommends
“[I’m] not sure we have the cognitive capacity.”

Whole Genome Scans Could Reveal Too Much

Posted by Franz

Whole Genome Scans Could Reveal Too Much
June 07, 2013
http://www.npr.org/2013/06/07/189520179/whole-genome-scans-could-reveal-too-much

Guests:

Hank Greely, Professor of Law, Director of the Center for Law and the Biosciences, Stanford University

Susan Wolf, Professor of Law and Medicine, University of Minnesota

Kelly Ormond, Certified Genetic Counselor, Director of the Genetic Counseling training program, Stanford University

Pam Widick, Nurse, Patient, Mayo Clinic Center for Individualized Medicine

What if you didn’t ask for it, you don’t want to know? Is the doc obligated to tell you anyhow?

a recent paper from the American College of Medical Genetics, which gives guidelines on how to deal with incidental things doctors might find

is there anything that we think sort of supersedes patient preference in the sense that we really think these are conditions where we’re sure enough about the genetic prediction, we think they’re serious conditions, it’s identifiable in you, and if you know about it in advance, you can do something to change the course, you can become healthier either because you’re getting screened or you’re doing something differently.

And so the committee decided that for a very small handful of conditions there were things that met that criteria and we felt should actively be disclosed.

as an example, there are 15 hereditary cancer conditions and 30 cardiovascular conditions and then two that have to do with taking anesthesia and having a very bad response.

We very clearly did not put conditions like Alzheimer’s disease or psychiatric illness or Huntington’s disease

medical care, testing, the information given back to patients, is governed by patients’ preferences. People don’t give up their rights when they go to see the doctor.
They get to decide what tests are done. They get to decide what information is given back to them.

expanding repeat diseases: Huntington’s disease

What does the sequence mean?
… different from the average human, but I can’t tell if it’s different in an important way.

===========================

More People Seek Genetic Testing, But There Aren’t Enough Counselors
April 18, 2016
http://www.npr.org/sections/health-shots/2016/04/18/473066953/more-people-seek-genetic-testing-but-there-arent-enough-counselors