Featured Research

from universities, journals, and other organizations

Donors should have access to their own raw data provided to biobanks

Date:
January 23, 2014
Source:
Harvard Medical School
Summary:
Scientists have called for data held in biobanks to be made accessible to the people donating material and data to them.

Scientists have called for data held in biobanks to be made accessible to the people donating material and data to them. In a paper published today in Science, Jeantine Lunshof and George Church from Harvard Medical School and Barbara Prainsack from King's College London write that donors should have unrestricted access to data derived from their own material and that advanced technology means allowing such access is today a question of will rather than feasibility.

Related Articles


Databanks containing information and biological materials from individuals are a crucial resource for medical and other research. Currently, data held in such biobanks are accessible only to researchers and not to the individuals who contributed the samples and data. Lunshof, Church and Prainsack argue that people donating material and data to biobanks should also have access to their own raw data.

Prainsack, reader (associate professor) in the Department of Social Science, Health & Medicine at King's, said, "We believe there are compelling ethical reasons for enabling donors to access the raw data derived from their material deposited in any kind of repository. Providing access to the data that are derived directly from the sample, before analysis and interpretation, recognizes the donor's agency in at least three ways: freedom to decide (if they wish to access data), option of independent analysis and informed decision about participation.

"Although we use biobanks as an example in our paper, our argument is applicable in principle to all contexts of database-based research. There is a crucial difference between providing access to data and returning findings. The possibility for research participants to access their raw data is a basic requirement for a just and reciprocal relationship, establishing at least a basic symmetry between those who donate and those who use data for their research."

Lunshof, Marie Curie Fellow in the HMS Department of Genetics and assistant professor in the VU University Amsterdam Department of Molecular Cell Physiology, said, "There is currently a rich debate about what results from data and sample analysis should be returned to participants. In addition to that, individuals should be able to access their raw data right from the start.

"These data -- which should be available for people to download themselves, if they choose to do so -- could be used by biobank participants to have independent analyses done, to analyse these data themselves or to store them in case they may become useful for personal decision-making in the future. Given that web-based technologies are regularly available to enable such access without incurring high additional cost, providing access to people's own raw data is a matter of will more than of feasibility."

In their paper, the authors neither expect nor suggest that all participants in a biobank will make use of an opportunity to access their raw data, but they assert that the principle of having such an opportunity will be an important step toward greater reciprocity in the relationship between biobanks and their participants.

Prainsack said, "It is clear that giving donors access to their raw data is essential to taking individuals seriously as partners in research, not merely as sources of sample and data."


Story Source:

The above story is based on materials provided by Harvard Medical School. Note: Materials may be edited for content and length.


Journal Reference:

  1. J. E. Lunshof, G. M. Church, B. Prainsack. Raw Personal Data: Providing Access. Science, 2014; 343 (6169): 373 DOI: 10.1126/science.1249382

Cite This Page:

Harvard Medical School. "Donors should have access to their own raw data provided to biobanks." ScienceDaily. ScienceDaily, 23 January 2014. <www.sciencedaily.com/releases/2014/01/140123142001.htm>.
Harvard Medical School. (2014, January 23). Donors should have access to their own raw data provided to biobanks. ScienceDaily. Retrieved October 25, 2014 from www.sciencedaily.com/releases/2014/01/140123142001.htm
Harvard Medical School. "Donors should have access to their own raw data provided to biobanks." ScienceDaily. www.sciencedaily.com/releases/2014/01/140123142001.htm (accessed October 25, 2014).

Share This



More Computers & Math News

Saturday, October 25, 2014

Featured Research

from universities, journals, and other organizations


Featured Videos

from AP, Reuters, AFP, and other news services

Real-Life Transformer Robot Walks, Then Folds Into a Car

Real-Life Transformer Robot Walks, Then Folds Into a Car

Buzz60 (Oct. 24, 2014) — Brave Robotics and Asratec teamed with original Transformers toy company Tomy to create a functional 5-foot-tall humanoid robot that can march and fold itself into a 3-foot-long sports car. Jen Markham has the story. Video provided by Buzz60
Powered by NewsLook.com
Microsoft Riding High On Strong Surface, Cloud Performance

Microsoft Riding High On Strong Surface, Cloud Performance

Newsy (Oct. 24, 2014) — Microsoft's Q3 earnings showed its tablets and cloud services are really hitting their stride. Video provided by Newsy
Powered by NewsLook.com
The Best Apps to Organize Your Life

The Best Apps to Organize Your Life

Buzz60 (Oct. 23, 2014) — Need help organizing your bills, schedules and other things? Ko Im (@konakafe) has the best apps to help you stay on top of it all! Video provided by Buzz60
Powered by NewsLook.com
Nike And Apple Team Up To Create Wearable ... Something

Nike And Apple Team Up To Create Wearable ... Something

Newsy (Oct. 23, 2014) — For those looking for wearable tech that's significantly less nerdy than Google Glass, Nike CEO Mark Parker says don't worry, It's on the way. Video provided by Newsy
Powered by NewsLook.com

Search ScienceDaily

Number of stories in archives: 140,361

Find with keyword(s):
 
Enter a keyword or phrase to search ScienceDaily for related topics and research stories.

Save/Print:
Share:  

Breaking News:

Strange & Offbeat Stories

 

Space & Time

Matter & Energy

Computers & Math

In Other News

... from NewsDaily.com

Science News

Health News

Environment News

Technology News



Save/Print:
Share:  

Free Subscriptions


Get the latest science news with ScienceDaily's free email newsletters, updated daily and weekly. Or view hourly updated newsfeeds in your RSS reader:

Get Social & Mobile


Keep up to date with the latest news from ScienceDaily via social networks and mobile apps:

Have Feedback?


Tell us what you think of ScienceDaily -- we welcome both positive and negative comments. Have any problems using the site? Questions?
Mobile iPhone Android Web
Follow Facebook Twitter Google+
Subscribe RSS Feeds Email Newsletters
Latest Headlines Health & Medicine Mind & Brain Space & Time Matter & Energy Computers & Math Plants & Animals Earth & Climate Fossils & Ruins