Group items tagged

"Prospective consent and governance principles for participant-led research Nine themes emerged from discussions and interviews relating to informed consent in and governance of PLR. As this PLR was driven by people with different backgrounds asking personal questions, we found that ethical reflection needed to be ongoing and tailored to the individual. For this reason, prospective governance principles were drafted rather than codified rules. Many of the themes were expressed over the course of our PLR as an ongoing informed consent. The process, fostered via frequent communication, helped to reinforce trust among participants and organisers.43 44 Transparency: All relevant information about the project should be actively shared among participants and participant-organisers, including the source of research funding, equipment selection, data management protocols, risks and benefits and conflicts of interest. Access to Expertise: Participant-led research (PLR) requires access to experts (eg, in experimental design, data analysis, research ethics) so that participants can rigorously carry out single-subject experiments.45 Data Access & Control: The participant has the right and ability to manage their own data, and has the final say in what they collect about themselves. Right to Withdraw: Participants have a right to reduce or withdraw their participation at any time. Relevance: PLR addresses questions of relevance to the participants. Beneficence: The participant actively reflects on the balance of benefits and risks of participation and freely choose whether to participate. Responsibility: PLR requires that the participant actively consider the potential benefits and harms of the project to both themselves and others. The responsibility to stay informed is an ongoing process, not a one-time decision. Flexibility: Ethical reflection in PLR should be tailored to individual needs and to the specific context, rather than be handled with 'one size fits all�

N1: wellness by experiment 17+ Back your wellness with data INGH Available on iOS only You can use this app to join a clinical trial on cognition. Comparing 2 treatments using caffeine (50-400 mg) and caffeine (50-400 mg) in combination with L-theanine (250 mg) : L-theanine is a naturally occurring amino acid most commonly found in green tea. I've downloaded the app will join the study. Interesting screen by screen informed consent process. Will report what I discover at an upcoming Apollo Meeting.

"  Presented by the Law and Policy Working Group and Ethics Working Group Date: Friday, November 22, 2019, from 1:00 PM to 2:15 PM EST Presented by the Law and Policy Working Group and Ethics Working Group Date: Friday, November 22, 2019, from 1:00 PM to 2:15 PM EST"

"I want it like I never dealt with 23andMe, which, as it turns out, is pretty much impossible - at least for the next decade."

"As a repository of sensitive patient information, the company's databases churn silently behind the scenes of their medical care, scooping up their most guarded secrets: the diseases they have, the drugs they're taking, the places their bodies are broken that they haven't told anyone but their doctor. The family of databases that make up MarketScan now include the records of a stunning 270 million Americans, or 82% of the population. The vast reach of MarketScan, and its immense value, is unmistakable. Last month, a private equity firm announced that it would pay $1 billion to buy the databases from IBM. It was by far the most valuable asset left for IBM as the technology behemoth cast off its foundering Watson Health business."