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(no longer active)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
- 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
- People
First Language (Writing about Individuals with Genetic Conditions)
compiled
by Debra Collins, M.S., CGC
Revised August 2000,
July 22, 2003
Genetic Conditions & Support Groups | Genetic Societies
| Clinical Resources
| Labs
| Clinics
| Genetics Education
| Careers
| Cytogenetics
| Genome Centers
| Genetic Computer Resources
| Professional Education
| Diversity | Advocacy
| Glossaries | Advisors
| Software
| Disclaimer | Privacy
| About | FAQ
| Suggestions & Feedback
| Search
Genetics Education Center
University of Kansas Medical Center © 1995-2008
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu
This site subscribes to the principles of the HONcode
(Health on the Net, Code of Conduct for Medical and Health Web Sites)
of the Health On the Net Foundation.