Tell it to me straight, doctor: why openness from health experts is vital

Robin Bisson
The Guardian
Originally published August 3, 2017

Here is an excerpt:

It is impossible to overstate the importance of public belief that the medical profession acts in the interests of patients. Any suggestions that public health experts are not being completely open looks at best paternalistic and at worst plays into the hands of those, such as the anti-vaccination lobby, who have warped views about the medical establishment.

So when it comes out that public health messages such as “complete the course” aren’t backed up by evidence, it adds colour to the picture of a paternalistic medical establishment and risks undermining public trust.

Simple public health messages – wear sunscreen, eat five portions of fruit and veg a day – undoubtedly have positive effects on everyone’s health. But people are also capable of understanding nuance and the shifting sands of new evidence. The best way to guarantee people keep trusting experts is for experts to put their trust in people.

The article is here.

What Does Patient Autonomy Mean for Doctors and Drug Makers?

Christina Sandefur
The Conversation
Originally published July 26, 2017

Here is an excerpt:

Although Bateman-House fears that deferring to patients comes at the expense of physician autonomy, she also laments that physicians currently abuse the freedom they have, failing to spend enough time with their patients, which she says undermines a patient’s ability to make informed medical decisions.

Even if it’s true that physician consultations aren’t as thorough as they once were, patients today have better access to health care information than ever before. According to the Pew Research Center, two-thirds of U.S. adults have broadband internet in their homes, and 13 percent who lack it can access the internet through a smartphone. Pew reports that more than half of adult internet users go online to get information on medical conditions, 43 percent on treatments, and 16 percent on drug safety. Yet despite their desire to research these issues online, 70 percent still sought out additional information from a doctor or other professional.

In other words, people are making greater efforts to learn about health care on their own. True, not all such information on the internet is accurate. But encouraging patients to seek out information from multiple sources is a good thing. In fact, requiring government approval of treatments may lull patients into a false sense of security. As Connor Boyack, president of the Libertas Institute, points out, “Instead of doing their own due diligence and research, the overwhelming majority of people simply concern themselves with whether or not the FDA says a certain product is okay to use.” But blind reliance on a government bureaucracy is rarely a good idea.

The article can be found here.

Approach-Induced Biases in Human Information Sampling

Laurence T. Hunt and others
PLOS Biology
Published: November 10, 2016

Abstract

Information sampling is often biased towards seeking evidence that confirms one’s prior beliefs. Despite such biases being a pervasive feature of human behavior, their underlying causes remain unclear. Many accounts of these biases appeal to limitations of human hypothesis testing and cognition, de facto evoking notions of bounded rationality, but neglect more basic aspects of behavioral control. Here, we investigated a potential role for Pavlovian approach in biasing which information humans will choose to sample. We collected a large novel dataset from 32,445 human subjects, making over 3 million decisions, who played a gambling task designed to measure the latent causes and extent of information-sampling biases. We identified three novel approach-related biases, formalized by comparing subject behavior to a dynamic programming model of optimal information gathering. These biases reflected the amount of information sampled (“positive evidence approach”), the selection of which information to sample (“sampling the favorite”), and the interaction between information sampling and subsequent choices (“rejecting unsampled options”). The prevalence of all three biases was related to a Pavlovian approach-avoid parameter quantified within an entirely independent economic decision task. Our large dataset also revealed that individual differences in the amount of information gathered are a stable trait across multiple gameplays and can be related to demographic measures, including age and educational attainment. As well as revealing limitations in cognitive processing, our findings suggest information sampling biases reflect the expression of primitive, yet potentially ecologically adaptive, behavioral repertoires. One such behavior is sampling from options that will eventually be chosen, even when other sources of information are more pertinent for guiding future action.

The article is here.

What is data ethics?

Luciano Floridi and Mariarosaria Taddeo
Philosophical Transactions Royal Society A

This theme issue has the founding ambition of landscaping data ethics as a new branch of ethics that studies and evaluates moral problems related to data (including generation, recording, curation, processing, dissemination, sharing and use), algorithms (including artificial intelligence, artificial agents, machine learning and robots) and corresponding practices (including responsible innovation, programming, hacking and professional codes), in order to formulate and support morally good solutions (e.g. right conducts or right values).  Data ethics builds on the foundation provided by computer and information ethics but, at the sametime, it refines the approach endorsed so far in this research field, by shifting the level of abstraction of ethical enquiries, from being information-centric to being data-centric. This shift brings into focus the different moral dimensions of all kinds of data, even data that never translate directly into information but can be used to support actions or generate behaviours, for example. It highlights the need for ethical analyses to concentrate on the content and nature of computational operations—the interactions among hardware, software and data—rather than on the variety of digital technologies that enable them. And it emphasizes the complexity of the ethical challenges posed by data science. Because of such complexity, data ethics should be developed from the start as a macroethics, that is, as an overall framework that avoids narrow, ad hoc approaches and addresses the ethical impact and implications of data science and its applications within a consistent, holistic and inclusive framework. Only as a macroethics will data ethics provide solutions that can maximize the value of data science for our societies, for all of us and for our environments.This article is part of the themed issue ‘The ethical impact of data science’.

The article is here.

Why Facts Don’t Unify Us

By Tali Sharot and Cass Sunstein
The New York Times
Originally published September 2, 2016

Here is an excerpt:

These findings help explain polarization on many issues. With respect to the Affordable Care Act, for example, people encounter good news, to the effect that it has helped millions of people obtain health insurance, and also bad news, to the effect that health care costs and insurance premiums continue to increase. For the act’s supporters, the good news will have far more impact than the bad; for the opponents, the opposite is true. As the sheer volume of information increases, polarization will be heightened as well.

Essentially the same tale can be told with respect to immigration, terrorism, increases in the minimum wage — and candidates for the highest office in the land. Voters are now receiving a steady stream of both positive and negative information about Hillary Clinton and Donald J. Trump. Which kind of news will have a large impact will depend partly on people’s motivations and initial convictions.

But there’s an important qualification. In our experiment, a strong majority showed movement; few people were impervious to new information. Most people were willing to change their views, at least to some extent.

The article is here.

‘Is this knowledge mine and nobody else's? I don't feel that.’

Patient views about consent, confidentiality and information-sharing in genetic medicine

Sandi Dheensa, Angela Fenwick, and Anneke Lucassen
J Med Ethics doi:10.1136/medethics-2015-102781

Abstract

In genetic medicine, a patient's diagnosis can mean their family members are also at risk, raising a question about how consent and confidentiality should function in clinical genetics. This question is particularly pressing when it is unclear whether a patient has shared information. Conventionally, healthcare professionals view confidentiality at an individual level and ‘disclosure without consent’ as the exception, not the rule. The relational joint account model, by contrast, conceptualises genetic information as confidential at the familial level and encourages professionals to take disclosure as the default position. In this study, we interviewed 33 patients about consent and confidentiality and analysed data thematically. Our first theme showed that although participants thought of certain aspects of genetic conditions—for example, the way they affect day-to-day health—as somewhat personal, they perceived genetic information—for example, the mutation in isolation—as familial. Most thought these elements were separable and thought family members had a right to know the latter, identifying a broad range of harms that would justify disclosure. Our second theme illustrated that participants nonetheless had some concerns about what, if any, implications there would be of professionals treating such information as familial and they emphasised the importance of being informed about the way their information would be shared. Based on these results, we recommend that professionals take disclosure as the default position, but make clear that they will treat genetic information as familial during initial consultations and address any concerns therein.

The article is here.

Q: Is privacy dead? Of course not

By Evan Selinger
Aeon Magazine - Ideas

Here is an excerpt:

But if we’re talking about informational privacy, it isn’t a thing. Informational privacy is a series of decisions individuals and groups make. Some crucial decisions are about social and ethical norms. This means we’ve got to decide which norms to value, determine when it’s appropriate for norms to be enforced and when norm violations should be allowed to slide, and figure out which sanctions are befitting of proper norm policing. In a pluralistic society, these ends are furthered by fraught and ongoing negotiation. Such negotiation is further complicated by disruptive innovation changing how people consume and share information.

The entire article is here.

Can Our Brains Handle the Information Age?

An Interview with Daniel Levitin
By Bret S. Stetka
Medscape
Originally posted September 24, 2014

In his new book, The Organized Mind, best-selling author and neuroscientist Daniel Levitin, PhD, discusses our brain's ability—or lack thereof—to process the dizzying flow of information brought on us by the digital age. Dr Levitin also suggests numerous ways of organizing mass information to make it more manageable. Medscape recently spoke with Dr Levitin about the neuroscience of information processing as well as approaches potentially useful to overworked clinicians.

The Fear of Information

Medscape: Your new book discusses how throughout history humans have been suspicious of increased access to information, from the printing press back to the first Sumerian writings. But I think most would agree that these were positive advancements. Do you think the current digital age weariness expressed by many is more of the same and that today's rapid technological progression will end up being a positive development for humanity? Or has the volume of data out there just gotten too big for the human brain to handle?

Dr Levitin: I have two minds about this. On one hand, there is this "same as it ever was" kind of complaint cycle. Seneca complained at the time of the ancient Greeks about the invention of writing—that it was going to weaken men's minds because they would no longer engage in thoughtful conversation. You couldn't interrogate the person who was telling you something, meaning that lies could be promulgated more easily and passed from generation to generation.

(cut)

If we look back at our evolutionary history, the amount of information that existed in the world just a few thousand years ago was really just a small percentage of what exists now. By some estimates, the amount of scientific and medical information produced in the last 25 years is equal to all of the information in all of human history up to that point.

The human brain can really only attend to a few things at once, so I think we are reaching a point where we have to figure out how to filter information so that we can use it more intelligently and not be distracted by irrelevant information. Studies show that people who are given more information in certain situations tend to make poorer decisions because they become distracted or overwhelmed by the irrelevant information.

The entire interview is here.