Welcome to the Nexus of Ethics, Psychology, Morality, Philosophy and Health Care

Welcome to the nexus of ethics, psychology, morality, technology, health care, and philosophy
Showing posts with label Medical Research. Show all posts
Showing posts with label Medical Research. Show all posts

Wednesday, November 15, 2023

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”.


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.

Friday, May 10, 2019

Privacy, data science and personalised medicine. Time for a balanced discussion

Claudia Pagliari
LinkedIn.com Post
Originally posted March 26, 2019

There are several fundamental truths that those of us working at the intersection of data science, ethics and medical research have recognised for some time. Firstly that 'anonymised’ and ‘pseudonymised' data can potentially be re-identified through the convergence of related variables, coupled with clever inference methods (although this is by no means easy). Secondly that genetic data is not just about individuals but also about families and generations, past and future. Thirdly, as we enter an increasingly digitized society where transactional, personal and behavioural data from public bodies, businesses, social media, mobile devices and IoT are potentially linkable, the capacity of data to tell meaningful stories about us is becoming constrained only by the questions we ask and the tools we are able to deploy to get the answers. Some would say that privacy is an outdated concept, and control and transparency are the new by-words. Others either disagree or are increasingly confused and disenfranchised.

Some of the quotes from the top brass of Iceland’s DeCODE Genetics, appearing in today’s BBC’s News, neatly illustrate why we need to remain vigilant to the ethical dilemmas presented by the use of data sciences for personalised medicine. For those of you who are not aware, this company has been at the centre of innovation in population genomics since its inception in the 1990s and overcame a state outcry over privacy and consent, which led to its temporary bankruptcy, before rising phoenix-like from the ashes. The fact that its work has been able to continue in an era of increasing privacy legislation and regulation shows just how far the promise of personalized medicine has skewed the policy narrative and the business agenda in recent years. What is great about Iceland, in terms of medical research, is that it is a relatively small country that has been subjected to historically low levels of immigration and has a unique family naming system and good national record keeping, which means that the pedigree of most of its citizens is easy to trace. This makes it an ideal Petri dish for genetic researchers. And here’s where the rub is. In short, by fully genotyping only 10,000 people from this small country, with its relatively stable gene pool, and integrating this with data on their family trees - and doubtless a whole heap of questionnaires and medical records - the company has, with the consent of a few, effectively seized the data of the "entire population".

The info is here.


Wednesday, January 16, 2019

Debate ethics of embryo models from stem cells

Nicolas Rivron, Martin Pera, Janet Rossant, Alfonso Martinez Arias, and others
Nature
Originally posted December 12, 2018

Here are some excerpts:

Four questions

Future progress depends on addressing now the ethical and policy issues that could arise.

Ultimately, individual jurisdictions will need to formulate their own policies and regulations, reflecting their values and priorities. However, we urge funding bodies, along with scientific and medical societies, to start an international discussion as a first step. Bioethicists, scientists, clinicians, legal and regulatory specialists, patient advocates and other citizens could offer at least some consensus on an appropriate trajectory for the field.

Two outputs are needed. First, guidelines for researchers; second, a reliable source of information about the current state of the research, its possible trajectory, its potential medical benefits and the key ethical and policy issues it raises. Both guidelines and information should be disseminated to journalists, ethics committees, regulatory bodies and policymakers.

Four questions in particular need attention.

Should embryo models be treated legally and ethically as human embryos, now or in the future?

Which research applications involving human embryo models are ethically acceptable?

How far should attempts to develop an intact human embryo in a dish be allowed to proceed?

Does a modelled part of a human embryo have an ethical and legal status similar to that of a complete embryo?

The info is here.

Sunday, October 2, 2016

Why you should worry about the privatization of genetic data

Kayte Spector-Bagdady
The Conversation
Originally posted September 8, 2016

Here is an excerpt:

But genetic data banks amassed by private companies don’t necessarily have to follow the same regulations regarding access to their data that federally funded researchers do. And a recent proposal to change consent regulations for human research may make it cheaper for private companies to collect and use this data than public ones.

As bioethicists (myself included) have warned, we need to pay attention to concerns about how these private genetic data banks are used and accessed before we enable a system where the future of public genetic research lies in private hands.

The article is here.

Wednesday, July 27, 2016

Research fraud: the temptation to lie – and the challenges of regulation

Ian Freckelton
The Conversation
Originally published July 5, 2016

Most scientists and medical researchers behave ethically. However, in recent years, the number of high-profile scandals in which researchers have been exposed as having falsified their data raises the issue of how we should deal with research fraud.

There is little scholarship on this subject that crosses disciplines and engages with the broader phenomenon of unethical behaviour within the domain of research.

This is partly because disciplines tend to operate in their silos and because universities, in which researchers are often employed, tend to minimise adverse publicity.

When scandals erupt, embarrassment in a particular field is experienced for a short while – and researchers may leave their university. But few articles are published in scholarly journals about how the research fraud was perpetrated; how it went unnoticed for a significant period of time; and how prevalent the issue is.

The article is here.

Monday, April 4, 2016

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.

Friday, February 21, 2014

Science Faction: Why Most Scientific Research Results are Wrong

Bloggingheads.tv
John Horgan and George Johnson discuss issues related to science

Why most scientific research results are wrong?

Is competition making fudged data more likely?

Science is not a triumphal march

Can academic publishing be reformed?

Essential and inessential skills for young science writers

The Big Bang and the case against falsifiability


Thursday, November 14, 2013

How medical researchers become morally entangled

By Henry S. Richardson
Oxford University Press Blog
Originally published October 27, 2013

A huge amount of ethical angst swirls around the topic of informed consent. Can lay people who are considering signing up as subjects in a medical study really be made to understand the risks they are facing? Can information about these risks be communicated across cultural and educational gulfs? What degree of informed understanding should we expect subjects to have, anyway? 

Underlying the process of informed consent, though, is a simpler and more fundamental issue. The one-sided focus of the medical-research ethics establishment on preventing harms and abuses has obscured this core function from view. We need to remember why consent is needed for participation in medical research in the first place. It is needed because the researchers need the subjects’ permission to do things that otherwise would be wrong to do. It is wrong to examine and touch people’s naked bodies in the ways researchers need to do, to collect samples of their blood, urine, and feces, and to collect detailed information on their medical histories without getting their permission.

The entire story is here.

Monday, November 4, 2013

Medical research ethics: more than abuse prevention?

By Henry S. Richardson
Oxford University Press Blog
Originally posted on October 20, 2013

Scholarly and regulatory attention to the ethics of medical research on human subjects has been one-sidedly focused on the prevention of moral disasters. Scandals such the US Public Health Service (PHS)’s Tuskegee syphilis experiments, which for decades observed the effects of untreated syphilis on the participants, most of whom were poor black sharecroppers, rightly spurred the broad establishment of a regulatory regime that emphasized the importance of preventing such severe harming and exploitation of the human subjects of research. Revelations in 2011 about a similarly horrific set of studies conducted by the PHS from 1946 to 1948 on sexually transmitted diseases has renewed this kind of concern, which has been strongly underlined in a recent report by the Presidential Commission for the Study of Ethical Issues.

The entire article is here.