Quality of Genetic Information on the Internet

Numerous standards are evolving regarding evaluation, documentation, and assessing quality of Internet Information.  

Parents, family members, and health care professionals seeking medical information on the Internet should carefully evaluate what is found to decide how useful it is. Helpful information includes identity of the authors, as well as their qualifications and affiliations such as a medical center, university, hospital or government agency (such as .edu, .gov and sometimes .org). Date of information is helpful, as information can be dated, or newer information and treatments may be available. Information may differ if the information is provided by a medical expert, or is personal information written by an individual based on their own experience. Often interpretation of genetic information for a particular individual involves a physical exam, and a review of relevant medical records including diagnostic testing on the individual and possibly other family members. Internet information may provide background information to help individuals with discussions with their health care provider.

Many sites include recommendations and checklists:

• HONcode Principles: Health On the Net Foundation Code of Conduct, medical/health sites
• Checklist of Criteria Used for Evaluation of Metasites, University of Michigan
• Evaluating Quality on the Net, HTillman, Libraries, Babson College, Babson Park, Massachusetts, May 2000
• Evaluating Web Pages, Links to Examples of Various Concepts (Authority and Accuracy, Objectivity
  , Currency and Coverage, Additional Evaluation Challenges), Wolfgram Memorial Library. October 2001
• Evaluating Web Sites, for librarians
• Evaluating Web Sites, Schools, Montgomery County Schools, PA
• Evaluating Medical Information about Breast Cancer, National Alliance of Breast Cancer Organizations. (2002), key questions to ask about a medical site (no longer active)
• Evaluating Quality on the Net, Tillman, H. N., May 2000), update of Sept 1995 article "Evaluating the Quality of Information on the Internet or Finding a Needle in a Haystack" presentation, John F. Kennedy School of Government, Harvard University, Cambridge, Massachusetts
• Evaluation of information sources, The World Wide Web Virtual Library, October 2002, criteria for evaluating information resources, particularly those useful to librarians and others who are selecting sites to include in an information resource guide, or informing users as to the qualities they should use in evaluating Internet information
• Guidelines for medical and health information sites on the Internet, Library Evaluation Criteria for Web Site Links, American Medical Association (3-17-2000), AMA guidelines for websites including principles for content, advertising and sponsorship, website privacy and confidentiality, and E-commerce, Principles Guiding AMA content
• Health-Related Web Site Evaluation Form, Emory University
• Healthfinder: Guide to Reliable Health Information, U.S. government portal to organizations, medical journals, state health departments and more
• Interactive health communication (IHC) Checklist, to judge whether health information offered by an (IHC) application is useful and reliable, also, Consumers and Evaluation of Interactive Health Communication Applications, Developers and Evaluation of Interactive Health Communication Applications, Wired for Health and Well-Being, Science Panel on Interactive Communication and Health (SciPICH)
• International Code of Ethics for health care sites and services on the Internet, May 2000, eHealth Ethics Initiative. English (PDF or HTML), Arabic (HTML) , Chinese (HTML), French (WORD File), German (PDF), Spanish (HTML), Foundations of the eHealth Code of Ethics
• Is This Health Information Good for Me?, checklist for evaluating medical, National Network of Libraries of Medicine (NNLM), also in Spanish (¿Como puede saber si la información le sirve?)
• Measuring quality and impact of the world wide web, Wyatt, J.C. (1997). British Medical Journal, BMJ 1997;314:1879 (28 June)
• Medical Information on the Internet, D Barnett, Contact a Family Directory, Canada, April 2003
• Methods to evaluate consumer health material, Knowledge Management Centre, School of Public Policy, University College, London, England
• Quality of Health Information, Healthfinder, Office of Disease Prevention and Health Promotion (ODPHP)
• Teacher Helpers: Critical Evalulation Information, Evaluation surveys for elementary school, middle school, secondary school level, also in Spanish , DiscoverySchool.com, to help students to critically evaluate a Web page for authenticity, applicability, authorship, bias, and usability
• The Good, the Bad, and the Ugly, Why It's a Good Idea to Evaluate Web Sources, SE Beck, New Mexico State University Library, 1997, Examples, Criteria, Suggestions
• Quality Filtering of Web Sites, H Tillman, Colorado Council of Medical Librarians
• Quick (Quality Information Checklist) Teachers Guide: resource to help young people evaluate information they find on the Internet, United Kingdom
• Selective Web Quality Bibliography (for medical information), SL MacCall, School of Library & Information Studies, University of Alabama, 9/15/2002
• Using Health Information on the Internet, How to find the most trustworthy health information Web sites, Canadian Health Network
• Web site Design and Usability Guidelines, How to Evaluate Health Information on the Internet, CancerNet, National Cancer Institute, list of questions to consider for health information online
• Why we need to evaluate what we find on the Internet, adapted from The Savvy Student's Guide to Library Research, Purdue University Undergraduate Library, IN, 2001

Genetics Resources and the Internet Publications

• Computer-Based Resources for Clinical Genetics, Collins, DL, Chapter 16, in A Guide to Genetic Counseling, DL Baker, J Schuette and W Uhlmann, Editors , Wiley, 1998
• Using the Internet to Disseminate Genetics Information for Public Health, O'Leary, L and Collins, DL,Chapter 31, in Genetics and Public Health, Khoury, Thomson and Burke, Editors, 2000
• Clinical Genetics Computer Resources, Genetics Education Center

Accessibility

• Make Your Web Pages Accessible, Center for Information Technology Accommodation
• Authoring Tool Accessibility Guidelines 1.0, World Wide Web Consortium (W3C)  Web Accessibility Initiative,  Recommendations 3 February 2000.  Three sets of guidelines for accessibility:  Web Content (for webmasters); Authoring Tools (for website/webpage authoring environment developers); and User Agents (for browser and assistive technology developers) www.w3.org/TR/2000/REC-ATAG10-20000203/
• WEB Metrics
• Bobby 3.1 Analysis, by CAST, Center for Applied Special Technology, analyzes web pages for accessibility to people with disabilities
• W3C HTML Validator, checks HTML documents for compliance with W3C HTML recommendations and other HTML standards
• CSS Validator, checks HTML documents for compliance with W3C HTML recommendations and other HTML standards

  Web Content Accessibility Guidelines

  1. Provide equivalent alternatives to auditory and visual content.
  2. Don't rely on color alone.
  3. Use markup and style sheets
  4. Create tables that transform gracefully.
  5. Ensure pages featuring new technologies transform gracefully.
  6. Ensure direct accessibility of embedded user interfaces.
  7. Design for device-independence.
  8. Provide context and orientation information.
  9. Provide clear navigation mechanisms.
  10. Ensure that documents are clear and simple.

  Validation Automated tools are fast and convenient but cannot identify all accessibility issues. Human review is needed to verify accessibility, and it is best to begin at the earliest stages of development, when accessibility issues are easier to correct and avoid. The WAI is developing an online Web Content Accessibility Curriculum
  

• Keyboard for single-handed typists - Dvorak keyboard, PC and Mac computers

• Configure Win95 [Control Panel, then Keyboard, then Languages, then Properties]
• Mac software free at shareware.cnet.com/
• Dvorak keyboard (vs. QWERTY) www.mwbrooks.com/dvorak/
• Voice Recognition Software Programs - allow computer to recognize & transcribe spoken words
• Dragon Naturally Speaking, Dragon (800) 437-2466
• Via Voice, IBM (800) 825-5263
• Voice Express, Lernout and Hauspie (800) 380-1234
• Text To Speech, Babylon, free
• Translation Programs
  • Free Translation (English, French, German, Italian, Norwegian, Portuguese, Spanish), text or web page
  • Translation service, AltaVista, also Babelfish (Spanish, French, Italian, Portuguese, German, English)
  • Babylon translation program, free (English to Spanish, German, Portuguese, French, Italian, Dutch, Japanese, Hebrew, Chinese)
  • Human Languages Page - dictionaries, translation programs, cultural resources (Spanish, German, French, Russian, Vietnamese, sign language, other). Old location

Privacy

• Principles for Website Privacy and Confidentiality, American Medical Association

• Guidelines for Reporting and Writing About People with Disabilities, 1995 Univ. Kansas, endorsed by national associations (see other publications)
• A Way with Words:  Guidelines and Appropriate Terminology For the Portrayal of Persons With Disabilities, Secretary of State,  Canada
• Understanding Disabilities: Examining Issues of Language and Portrayal, MKTan

compiled by Debra Collins, M.S., CGC

Revised August 2000, Cannot perform flastmod(): Win32 Error Code = 87

   

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University of Kansas Medical Center © 1995-2012
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu

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