PRESS-NEWS.org - Press Release Distribution
PRESS RELEASES DISTRIBUTION

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

2014-01-24
(Press-News.org) Contact information: David Cameron
david_cameron@hms.harvard.edu
617-432-0441
Harvard Medical School
Donors should have access to their own raw data provided to biobanks 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.

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."

### Harvard Medical School has more than 7,500 full-time faculty working in 11 academic departments located at the School's Boston campus or in one of 47 hospital-based clinical departments at 16 Harvard-affiliated teaching hospitals and research institutes. Those affiliates include Beth Israel Deaconess Medical Center, Brigham and Women's Hospital, Cambridge Health Alliance, Boston Children's Hospital, Dana-Farber Cancer Institute, Harvard Pilgrim Health Care, Hebrew Senior Life, Joslin Diabetes Center, Judge Baker Children's Center, Massachusetts Eye and Ear Infirmary, Massachusetts General Hospital, McLean Hospital, Mount Auburn Hospital, Schepens Eye Research Institute, Spaulding Rehabilitation Hospital and VA Boston Healthcare System.

King's College London is one of the top 20 universities in the world (2013/14 QS World University Rankings) and the fourth oldest in England. It is The Sunday Times' "Best University for Graduate Employment 2012/13." A research-led university based in the heart of London, King's has more than 25,000 students (of whom more than 10,000 are graduate students) from nearly 140 countries and more than 6,500 employees. King's is in the second phase of a £1 billion redevelopment program that is transforming its estate.


ELSE PRESS RELEASES FROM THIS DATE:

Researchers discover simple amoeba holds the key to better treatment for Alzheimer's

2014-01-24
Scientists have discovered the use of a simple single-celled amoeba to understand the function of human proteins in causing Alzheimer's disease. The new ...

Central Europeans already digested milk as well as us 1,000 years ago

2014-01-24
Back in the Middle Ages, Central Europeans were already capable of digesting milk, yoghurt and cheese just as well as us today. Researchers at the University of Zurich's Centre for ...

Generation blame: How age affects our views of anti-social behavior

2014-01-24
A study of interpretations of anti-social behaviour (ASB) found a significant gap between the views of different age groups - with older people more likely than younger people to interpret ...

Changing climate: How dust changed the face of the earth

2014-01-24
Bremerhaven/Germany, 24 January 2014. In spring 2010, ...

World's first magma-enhanced geothermal system created in Iceland

2014-01-24
RIVERSIDE, Calif. — In 2009, a borehole drilled at Krafla, ...

Using engineering plus evolutionary analyses to answer natural selection questions

2014-01-24
AMHERST, Mass. – Introducing a new approach that combines evolutionary and engineering analyses to identify the targets of natural selection, researchers ...

Various microstructures fabricated by a solvent-cast 3-D printing technique

2014-01-24
Various microstructures including straight filaments, layer-by-layer ...

Researchers discover potential drug targets for early onset glaucoma

2014-01-24
Using a novel high-throughput screening process, scientists have for the first time identified molecules with the potential to block the accumulation of a toxic eye protein that ...

National plan for preventing healthcare-associated infections shows progress

2014-01-24
Philadelphia, Pa. (January 23, 2014) – Independent evaluators have found that measurable ...

The lung microbiome: A new frontier in pulmonary medicine

2014-01-24
The Annals of the American Thoracic Society has released a comprehensive supplement on the 56th annual Thomas L. Petty Aspen Lung Conference entitled "The Lung Microbiome: A New Frontier in Pulmonary Medicine." ...

LAST 30 PRESS RELEASES:

Study unexpectedly finds living in rural, rather than urban environments in first five years of life could be a risk factor for developing type 1 diabetes

Editorial urges deeper focus on heart-lung interactions in pulmonary vascular disease

Five University of Tennessee faculty receive Fulbright Awards

5 advances to protect water sources, availability

OU Scholar awarded Fulbright for Soviet cinema research

Brain might become target of new type 1 diabetes treatments

‘Shore Wars:’ New research aims to resolve coastal conflict between oysters and mangroves, aiding restoration efforts

Why do symptoms linger in some people after an infection? A conversation on post-acute infection syndromes

Study reveals hidden drivers of asthma flare-ups in children

Physicists decode mysterious membrane behavior

New insights about brain receptor may pave way for next-gen mental health drugs

Melanoma ‘sat-nav’ discovery could help curb metastasis

When immune commanders misfire: new insights into rheumatoid arthritis inflammation

SFU researchers develop a new tool that brings blender-like lighting control to any photograph

Pups in tow, Yellowstone-area wolves trek long distances to stay near prey

AI breakthrough unlocks 'new' materials to replace lithium-ion batteries

Making molecules make sense: A regional explanation method reveals structure–property relationships

Partisan hostility, not just policy, drives U.S. protests

The Journal of Nuclear Medicine Ahead-of-Print Tip Sheet: August 1, 2025

Young human blood serum factors show potential to rejuvenate skin through bone marrow

Large language models reshape the future of task planning

Narrower coverage of MS drugs tied to higher relapse risk

Researchers harness AI-powered protein design to enhance T-cell based immunotherapies

Smartphone engagement during school hours among US youths

Online reviews of health care facilities

MS may begin far earlier than previously thought

New AI tool learns to read medical images with far less data

Announcing XPRIZE Healthspan as Tier 5 Sponsor of ARDD 2025

Announcing Immortal Dragons as Tier 4 Sponsor of ARDD 2025

Reporting guideline for chatbot health advice studies

[Press-News.org] Donors should have access to their own raw data provided to biobanks