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About hk

Admin at Open Humans Foundation

What We’re Reading

What We’re Reading

Some links to articles we found interesting. Hope you enjoy!

FTC Cracks Down on Marketers of “Melanoma Detection” Apps
Federal Trade Commission – February 23

Pregnant Women Are Finding Out They Have Cancer From A Genetic Test Of Their Babies
Virginia Hughes, BuzzFeed – March 5

What to do with a million (billion) genomes? Share them
Dawn Field, Oxford University Press blog – March 5

Apple Could Lead In Healthcare. Here’s Why It Won’t.
Dan Munro, Forbes – March 9

Genome Study Predicts DNA of the Whole of Iceland
Earlier, more provocative title: “Ethics Rules Keep DeCode Genetics From Revealing Cancer Risks”.
Antonio Regalado, MIT Technology Review – March 25

FDA ‘Taking a Very Light Touch’ on Regulating the Apple Watch
Adam Satariano, Bloomberg – March 30

Research led by participants: a new social contract for a new kind of research
Effy Vayena, et al., Journal of Medical Ethics – March 30

A New Facebook App Wants To Test Your DNA
The “Genes for Good” research study, which will return raw genotyping data to participants.
Virginia Hughes, BuzzFeed – March 31

The Healing Power of Your Own Medical Records
Steve Lohr, New York Times – March 31

Using Patient Data to Democratize Medical Discovery
Steve Lohr, New York Times: Bits blog – April 2

Ancestry.com is quietly transforming itself into a medical research juggernaut
Daniela Hernandez, Fusion – April 3

Mark Cuban Ignites Digital Health Firestorm On Twitter
Dan Munro, Forbes – April 5

A WordPress for genetic data, Curoverse opens in beta to researchers
Nidhi Subbaraman, BetaBoston – April 14

Media highlights about our launch

Some highlights of news coverage of the Open Humans launch:

We also had press in Reuters, Boston Globe / BetaBoston, Nature, Geek.com, HealthIT Security, Popular Science, the Daily Free Press, the Scientist, Scientific American, PM Live, the Knight Foundation blog [1] [2], the Stack, Geek, Fortune, and RT News.

We’re honored by the tremendous positive response to our launch!

Open Humans – website updates and improvements

We’ve had a wonderful response to our launch two weeks ago – as of today, over 1,000 people have signed up as members of this new community!

We’ll always be working hard to expand and improve the site. Here’s our first batch to report, post-launch.

A “Welcome” guide for new users
One thing our site really needed was a guide for new members! We’ve added some Welcome pages to help people get started with first steps.

Click here to see our tips for getting started on Open Humans.

Improved login
We also improved our login process: Now you can log in with your username or your email address. If you had trouble logging in before, we hope this makes it much easier!

Data sources survey
One of our new welcome pages is actually a survey. Do you have data sources (e.g. 23andMe, FitBit, RunKeeper) that you’re interested in donating to research?

Although we can’t build everything at once, it’s important for us to know which data sources represent the highest value for our community – if you’re a member, we’d love to hear from you.

To contribute, please go to our site to fill out the survey.

We’re continuing to work hard to improve the website, as well as finding new studies and opportunities to import and receive data. Thank you for your participation and willingness to open-source your body!

What We’re Reading

A list of things from around the web that we’re reading. Hope you enjoy!

Who Should Have Access to Your DNA? Medium

UW Study Finds Returning Incidental Findings May be Cost Effective. Genome Web

Topol: Why Are Doctors and Hospitals the Owners of Patient Records? Medscape

Teen identifies rare mutation in her own cancer, champions new age of open-access genetics. Genetic Literacy Project

Biology, Computing, and the History of Molecular Sequencing: From Proteins to DNA, 1945–2000.

Discrimination based on genetics could soon be illegal, and it’s right on time. Canada.com

The First Amendment Right to Speak about the Human Genome. Social Science Research Network

Trust me, I’m a medical researcher. Science Magazine

Every Patient a Subject: When personalized medicine, genomic research, and privacy collide. Slate

Small company offering direct-to-consumer whole genomes for just $1850 Facebook post (related to the New product for 2015: sub-$2000 whole-genome sequencing announcement from Full Genomes).

Highlights from the Network, December 2014 and January 2015

Through our collaborations and programs like the GET Conference, Personal Genome Project, & Open Humans, we have the good fortune of interacting with a lot of people doing incredible things in the world.  So, we are starting a new series that will keep track of noteworthy articles and media featuring individuals in our broad network.  Here is a selection of recent highlights, we hope you enjoy it:

Highlights from the Network, November 2014

Through our collaborations and programs like the GET Conference, Personal Genome Project, & Open Humans, we have the good fortune of interacting with a lot of people doing incredible things in the world.  So, we are starting a new series that will keep track of noteworthy articles and media featuring individuals in our broad network.  Here is a selection of highlights, we hope you enjoy it: