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***….
..
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…
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October 27, 2012
Posted by Janice Flahiff |
Health News Items | Informed consent, Medical research, Online community, PatientsLikeMe, Personal Genome Project, PLoS Medicine, public private initiatives, Selection bias |
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Those of you who follow my blog notice that from time to time I highlight multilingual health information Web sites as Healthy Roads Media.
Recently (via a US govt listserv- PHPartners) I ‘ve come across a wonderful list of general health information resources in multiple languages. This resource list is a subset of the larger Multi-Cultural Resources for Health Information. Multi-Cultural Resources includes links in the following areas
Oh, I haven’t forgotten. Here is the list of Health Resources in Multiple Languages.
- Center for Food Safety and Applied Nutrition Documents in Other Languages
Center for Food Safety and Applied Nutrition, U.S. Food and Drug Administration
- Consumer Health Information in Many Languages
Multilingual online health resources, organized by specific
languages, including glossaries
National Network of Libraries of Medicine, National Library of Medicine
- EurasiaHealth Knowledge Network
Clearinghouse of free resources on Central & Eastern Europe and
the New Independent States
American International Health Alliance
United States Agency for International Development
- Facts for Families
In English, Spanish, German, Malaysian, Polish, and Icelandic
American Academy of Child & Adolescent Psychiatry
- Health Access Project
Translated Hospital Instructions
- Health Information Translations
Information for limited English proficiency patients translated into various languages
The Ohio State University Medical Center, Mount Carmel Health System
OhioHealth
- Health on the Net Select
Searchable database of medical and health queries
Available in English, French, German, Spanish, and Portuguese
- Health Translations Directory
From Australia. Contains links to online multi-lingual resources
Department of Human Services
State Government of Victoria, Australia
- Healthy Roads Media
Site contains free health education materials in a number of languages
and a variety of formats
Healthy Roads Media
- Heart and Stroke Foundation of Canada
Material available in English and French. French link found at bottom of page
Heart and Stroke Foundation of Canada
- Multilingual Health and Safety Resource Guide
Labor Occupational Health Program, Center for Occupational and Environmental Health
University of California at Berkeley
- Multilingual Health Information
Stanford Health Library, Stanford University
- Free Publications for Women
Easy-to-read pamphlets, available multiple languages
Office of Women’s Health, U.S. Food and Drug Administration
- Patient Information Brochures for Gastrointestinal and Endoscopic Surgery
Material available in English, French, Polish, Spanish, and Vietnamese
The Society of Gastrointestinal and Endoscopic Surgeons
- Resources by Language
Health topics in 50 languages
NSW Multicultural Health Communication Service
New South Wales, Australia
- Translated British Columbia Health Files
Fact sheets translated into Chinese, French, Punjabi, Spanish, and Vietnamese
Ministry of Health, British Columbia, Canada
- Urban Health Partners
Spotlight on Arabic language health materials and Arab American health.
Additional materials on Culturally Responsive Health Care
Vera P. Shiffman Medical Library, Wayne State University
- Vaccine Information in Other Languages
Vaccine information in over 30 languages
Immunization Action Coalition
- West Nile Virus Multilingual Fact Sheets
Patient education materials about West Nile Virus in 22 languages
Ontario Ministry of Health and Long-Term Care
Government of Ontario, Canada
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October 27, 2012
Posted by Janice Flahiff |
Educational Resources (High School/Early College(, Health Education (General Public), Librarian Resources, Tutorials/Finding aids | consumer health information, health information, multilingual_health_information, multiple_language_health_information, patient education |
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