Getting Comfortable With The Basics

Science Wants Your Data

Science Wants Your Data by fivethirtyeight.com

Eric Dishman wants your data. As the director of the National Institutes of Health’s All of Us research program, he’s trying to convince 1 million Americans to donate reams of sensitive personal information to science. Electronic medical records? Gimme. Genetic data? He’ll take it. Residence history? His inbox waits with open arms.


The future of health begins with you by joinallofus.org

The All of Us Research Program has a simple mission. We want to speed up health research breakthroughs. To do this, we’re asking one million people to share health information. In the future, researchers can use this to conduct thousands of health studies. 


I handed over my genetic data to the NIH. Here’s why you should, too by statnews.com

The National Institutes of Health recently launched the All of UsResearch Program to create one of the largest, richest public resources for biomedical research in human history. Its mission is to accelerate medical breakthroughs that personalize prevention, treatment, and care for all Americans. As the director of this unprecedented program — and as a cancer survivor, patient advocate, and participant in more than a dozen research studies — I want to share how we are safeguarding participant confidentiality and personal data.


The world needs more Data Donors. by OurDataHelps.org

Believe it or not, a major challenge for cutting edge research is access to data. The data you donate will be used by scientists and researchers to further scientific understanding of mental and emotional health. If you are a suicide loss survivor, a person with lived experience of suicidal thoughts or attempts, or if you just want to help, please share your data and/or the data of a loved one. You can help by sharing what you know, your data helps.  


Benefits of Using Bitmark Donation App by bitmark.com

One organ donor can save 8 lives. One data donor can save millions of lives. Are you a data donor?

Your personal data is your most valuable digital asset. Bitmark makes it simple and safe for users to donate their data to health researchers. Through the Data Donation app, donors can safely connect their Health app data to studies that they choose, securely donate their data with full consent, and easily track all their donations. 


The Data Donor Movement – A Dateva initiative:

Appealing to people worldwide to donate their health data for research in a secure and privacy-mindful way.

Petitioning governments to make it mandatory for healthcare organizations to share their data.

  • Immediate Goal
    Create a streamlined repeatable process for accessing hospital  data for researchers and technology companies that know how to handle data safely
  • Long Term Goal
    Release all hospitals data in an Open Data format.  

Data donation after death  by David M Shaw1 , Juliane V Gross2 & Thomas C Erren2

A proposal to prevent the waste of medical research data.

What happens to your personal data after you die? Most of the discussion on this topic has focused on whether and how relatives should be given access to the media accounts and music…


You Can’t Hide Your Genes by Slate

Consumer genetic databases aren’t the only side door for police to get your DNA.

The arrest of Joseph James DeAngelo as the suspected Golden State Killer has both thrilled and worried watchers. Bringing the Golden State Killer to justice is a victory for law enforcement and public safety. But with his identification through a publicly accessible genealogical DNA database, there are serious questions about who now is subject to genetic surveillance by the government, and not just by the online commercial services that sequence or store DNA data for genealogical research. 

 

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