Cool Toys Pic of the day – We Consent

Screen_shot_2012-02-13_at_10

We Consent:
http://weconsent.us/

Various research funding organizations, especially those from the
government, have for some years now been encouraging a more open and
collaborative approach to research. At the same time, concerns about
patient privacy, compounded by health literacy and struggles with
informed consent, have created barriers to the same ideals. I’ve been
reading Misha Angrist’s book, Here is a Human Being: At the Dawn of
Personal Genomics
.

Here is a Human Being: At the Dawn of Personal Genomics:
http://www.amazon.com/Here-Human-Being-Personal-Genomics/dp/0061628336

One of the huge challenges discussed over and over throughout the book
was the issue of informed consent. To make genomic research
worthwhile, it is essential to go the big data route, and get LOTS of
data from many many people, not just the genomic data but also the
phenome and exposome. That is an awful lot of info for people to
share. David Brin, author of The Transparent Society, might be
delighted and supportive, but others less so. To address the issue,
there is no way around it. There MUST be a better way to handle
informed consent for this type of research, data, and data sharing.

The problem encountered early in the book is that for informed consent
they really needed people with a degree in some sort of genetics. Ah,
well, that let’s out most of us, doesn’t it? Throughout the book,
there are a lot of ideas tossed around about how to address that
challenge, how to bridge the gap, how to get the core information
necessary to truly consent to personal genomics research and data
sharing in a form that is accessible and comprehensible to most folk.

That is the goal of this site.

In their words:

“Standard legal and technical systems for common genomic research and
public genomic research.”

“The Consent to Research project seeks to create the world’s largest
pool of openly available, user-contributed data about health and
genomics. We’re achieving that goal by helping people become members
of a unique group – a “cohort” who not only gather data about
themselves and their health, but donate that data to the growing
numbers of data-driven research scientists.”

Advertisements

One thought on “Cool Toys Pic of the day – We Consent

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s