‘Revolutionary’ Findings Of Online Studies Should Be Interpreted With Caution

The studies are not necessarily representative of the population.
Also, some of the organizations involved sell your personal information you report to pharmaceutical and insurance companies!

 

From the 25th October 2012 article at Medical News Today

‘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 studies, including selection bias, information bias, and confounding. These limitations mean that the results and conclusions of research using these methods need to be interpreted with caution, according to a paper published in the journal PLoS Medicine***….

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Studies relying on collections of self-reported data by self-selected participants raise critical questions that require further ethical analysis and public debate – for example, regarding the provision of adequate consent, the safeguarding of public trust, disclosure of commercial development of research results, and the sale of participants’ data to third parties.

“We worry that overstating the conclusions that can be drawn from these resources may impinge on individual autonomy and informed consent,” the authors say. “Only a responsible approach with realistic expectations about what can be done with and concluded from the data will benefit science in the long run.”

The authors argue that clarity regarding the benefits of research using solicited personal data is particularly important when the data collected are also used for other purposes, such as selling participants’ information to pharmaceutical and insurance companies.

“The potential for sharing participants’ data with third parties as well as the commercial uses of research findings should be disclosed more explicitly to participants prior to consent,” they conclude.

*** From the site

Summary Points

• An increasing number of public/private initiatives are exploring novel ways of conducting scientific research, including the use of social media and online collection of self-reported data.
• Research relying on collection of self-reported data by self-selected participants has known methodological limitations, including selection bias, information bias, and confounding.
• Such limitations may mean that results and conclusions of research using data obtained through online communities need to be interpreted with caution, as further replication is often required.
• The findings of research, including their potential actionability, should be communicated to participants in a way that is understandable, accurate, complete, and not misleading.
• The potential for sharing participants’ data with third parties as well as the commercial uses of research findings should be disclosed to participants prior to consent.

Introduction 

An increasing number of public and commercial initiatives invite individuals to participate in scientific research via the internet (Table 1). People are asked to provide information about personal medical history, medications, physical traits and measurements, ethnicity/ancestry, lifestyle and environmental exposures, and to donate biological material, generally saliva or blood, for DNA analysis. Some initiatives, such as the Personal Genome Project, have been launched with the specific goal of conducting scientific research, whereas others perform scientific analyses using data that were at least partly collected for other purposes. For example, PatientsLikeMe is an online community where patients can share information on symptoms, health state, and treatments to learn from each others’ experiences, and the company 23andMe sells personal genome tests to individuals who want to learn their genetic risks of common diseases, carrier status of rare diseases, response to drug treatment, and ancestry. Data are collected predominantly through self-report online questionnaires and some initiatives offer the opportunity to make data accessible for the public. For example, the Personal Genome Project publishes anonymized data online and participants of PatientsLikeMe can choose to publish all data publicly available on the web or make data accessible only to registered users.

Strong claims regarding the benefits of research using these resources are often made in order to encourage individuals to provide personal (health) information. For example, 23andWe, the research arm of 23andMe “gives customers the opportunity to leverage their data by contributing it to studies of genetics. With enough data, we believe 23andWe can produce revolutionary findings that will benefit us all” [1]. PatientsLikeMe tells patients that sharing personal stories and health data does not only enable individuals to “put your disease experiences in context and find answers to the questions you have” but also gives “the opportunity to help uncover great ideas and new knowledge” [2]. But how valid are these claims? Can online data collection lead to major breakthroughs in health research? We worry that overstating the conclusions that can be drawn from these resources may impinge on individual autonomy and informed consent. Just as researchers must take care to accurately convey direct benefits to study participants (which, we argue, in these situations are often small), they should also describe the likely outcomes and known limitations of observational studies conducted using volunteers. Clarity regarding the benefits of research using solicited personal data is particularly important when the data collected are also used for other purposes (e.g., PatientsLikeMe may sell members’ information to pharmaceutical and insurance companies [2]), lest the allure of participation in a scientific study be used as a Trojan horse to entice individuals to part with information they might not otherwise volunteer…

 

Related articles

• Balancing health privacy with innovation will rely on improving informed consent (radar.oreilly.com)
• A Booklet on Participants’ Rights to Improve Consent for Clinical Research: A Randomized Trial (plosone.org)