Building trust for online health research

February 20, 2013

Status updates, patient forums, blog comments – among the incredible amount of personal information on the Web is a potential trove of health data. Bioethicists writing in Science Translational Medicine acknowledge the value of this resource but argue that to be ethically acceptable for use in research, traditional models of informed consent must be adapted to suit the dynamic online environment.

"Context is crucial to what people reveal about themselves on the Web, and it should be central to how informed consent is obtained," says co-author Jeffrey Kahn, PhD, MPH, the Levi Professor of and Public Policy at the Johns Hopkins Berman Institute of Bioethics. "The Web is inherently interactive, and that can be used in innovative ways to create a collaborative consent process that will build trust, a key element in making Web-based research more useful, more user-friendly and ultimately more respectful of the rights and interests of individuals whose information is collected," Kahn says.

In the essay, titled "Caught in the Web: Informed Consent for Online Health Research," Kahn and his co-authors argue that traditional approaches to informed consent for research do not translate effectively to research taking place in the online environment. Likewise, they say typical consent agreements found on the Web are opt-in or opt-out models used in consumer contexts, which do not meet the ethical standards for in research.

Kahn offers the scenario of a researcher collecting information openly shared on or a patient community forum, removing individuals' names, and using that data in a study; did users who posted online give consent for such research use of their information? "The central ethical question is whether a person sharing information online in a non-research context has consented to research use of that information, and the answer is 'no'," Kahn says. "The Web should not be turned into the Wild West of health research; rather, its unique features must be used to effectively and creatively satisfy the ethical requirements of the research consent process," he adds.

"At a minimum, transparent disclosure of the research uses of online personal data is required," write Kahn and his co-authors, Effy Vayena, PhD, senior fellow at the Institute of Biomedical Ethics, University of Zurich, and Anna Mastroianni, JD, MPH, professor in the School of Law and Institute for Public Health Genetics, University of Washington.

The authors note a recent controversial proposal in the European Union on the processing and 'free movement' of data beyond the original context and intention of the Web user. The proposal includes a digital "right to be forgotten," requiring that users have the option to permanently delete personal data from the Web.

"We want -based research to move forward, because it offers unprecedented depth and breadth of , with potential applications to that will improve our understanding across a wide range of areas as we enter the age of Big Data," Kahn says. "Giving users more control in a more robust and transparent consent process will build trust, which is crucial to all research, whether online or not."

Explore further: Is informed consent threatening biobank research?

More information: Caught in the Web: Informed Consent for Online Health Research, Science Translational Medicine, 2013.

Related Stories

Is informed consent threatening biobank research?

October 5, 2011
Having to obtain informed consent for the use of left-over human tissue samples could be hampering essential biobank research says a research group on BMJ.com today.

Limitations to the 'revolutionary' findings of online studies

October 23, 2012
'Direct to consumer' research, using data obtained through increasingly popular online communities such as 23andMe, PatientsLikeMe and the Personal Genome Project, has methodological limitations that are known to epidemiological ...

Penn-developed online informed consent tool could boost number of patients in cancer clinical trials

October 3, 2011
A new multimedia informed consent tool accessed via the Internet may make it easier for cancer patients to understand and feel comfortable enrolling in clinical trials, according a study conducted by researchers in the Perelman ...

Public prefers limited informed consent process for biobanks

June 29, 2011
Biobanks are repositories for tissue samples, usually in the form of blood or saliva or leftover tissue from surgical procedures. These samples are collected and used for future research, including genetic research. They ...

Recommended for you

Exploring the potential of human echolocation

June 25, 2017
People who are visually impaired will often use a cane to feel out their surroundings. With training and practice, people can learn to use the pitch, loudness and timbre of echoes from the cane or other sounds to navigate ...

Team eradicates hepatitis C in 10 patients following lifesaving transplants from infected donors

April 30, 2017
Ten patients at Penn Medicine have been cured of the Hepatitis C virus (HCV) following lifesaving kidney transplants from deceased donors who were infected with the disease. The findings point to new strategies for increasing ...

'bench to bedside to bench': Scientists call for closer basic-clinical collaborations

March 24, 2017
In the era of genome sequencing, it's time to update the old "bench-to-bedside" shorthand for how basic research discoveries inform clinical practice, researchers from The Jackson Laboratory (JAX), National Human Genome Research ...

The ethics of tracking athletes' biometric data

January 18, 2017
(Medical Xpress)—Whether it is a FitBit or a heart rate monitor, biometric technologies have become household devices. Professional sports leagues use some of the most technologically advanced biodata tracking systems to ...

Financial ties between researchers and drug industry linked to positive trial results

January 18, 2017
Financial ties between researchers and companies that make the drugs they are studying are independently associated with positive trial results, suggesting bias in the evidence base, concludes a study published by The BMJ ...

Best of Last Year – The top Medical Xpress articles of 2016

December 23, 2016
(Medical Xpress)—It was a big year for research involving overall health issues, starting with a team led by researchers at the UNC School of Medicine and the National Institutes of Health who unearthed more evidence that ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.