Building Trust For Online Health Research

Bioethicists Call for Collaborative Consent To Ensure Ethical Practices While Leveraging The Web’s Research Potential

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.

Jeffrey Kahn

Jeffrey Kahn

“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 Bioethics 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 informed consent in research.

Kahn offers the scenario of a researcher collecting information openly shared on Facebook 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 Web-based research to move forward, because it offers unprecedented depth and breadth of information, with potential applications to health research 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.”

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Jeffrey Kahn, PhD
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Johns Hopkins Berman Institute of Bioethics


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Profile: Berman Institute Director Ruth Faden

Featured in the December 2012 Hadassah Magazine

By Barbara Pash

When Ruth Faden looks back on her long career, she can pinpoint the moment she decided to go into public health.

She was doing her master’s degree in American studies at the University of Chicago, working for a professor doing research on female contraception. Her job was to recruit young women to test a new intrauterine device. She considered volunteering to use the IUD herself. But when Faden told the professor—whom she remembers as a kind and caring person—his response shocked her: “Oh no, my dear,” he replied, “why don’t you wait until we know more.”

“It turned my world upside down,” says Faden, who was horrified that she had been recruiting women for such a risky project. She changed her course of study, and got a master’s and a doctoral degree in public health, both from the University of California Berkeley, and embarked on a new career.

Faden is the founder of Johns Hopkins Berman Institute of Bioethics, and has been the director since it opened in 1995. The institute focuses on the ethics of clinical practice, biomedical science and public health locally and globally, and engages students and policymakers in discussions of those issues. Located on the Johns Hopkins East Baltimore Medical Campus, site of Hopkins Hospital and Kennedy Krieger Institute, the institute, with a staff of over 30 core and affiliated faculty, is one of the largest such facilities in the world. Since inception, the institute has received more than $30 million in federal research funds and $49 million in philanthropic support.

Not only did she help found the premier institute on bioethics, Faden has also written seminal books in the field and won numerous awards, most recently the 2011 Lifetime Achievement Award granted to Faden and her husband, bioethicist Tom Beauchamp, by Public Responsibility in Medicine and Research, a nonprofit dedicated to advancing the highest ethical standards in the conduct of research. …

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