genetic education Internet sites and peerreviewed

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1 Volume 30, Number 6 November/December Genetics and Type 1 Diabetes: Online Resources for Diabetes Educators Eric R. Manthei, BS Linda M. Siminerio, RN, PhD Yvette Conley, MS, PhD Denise Charron- Prochownik, RN, PhD Angela S. Feathers, BS Bashira Charles, RN, MSN Janice S. Dorman, PhD From the Department of Human Genetics (Mr Manthei and Ms Feathers), the Graduate School of Public Health (Dr Charron-Prochownik and Ms Charles), the School of Medicine (Dr Siminerio), and the School of Nursing (Drs Dorman, Conley, and Charron-Prochownik, and Ms Charles), University of Pittsburgh, Pennsylvania. This research was supported by a grant from the United States Army Medical Research Acquisition Activity, Fort Detrick, Maryland, Grant No. DAMD Correspondence to Janice Dorman, PhD, University of Pittsburgh, School of Nursing, 3500 Victoria Street, Room 350, Pittsburgh, PA ( jsd@pitt.edu). PURPOSE genetic education Internet sites and peerreviewed medical literature were reviewed and critiqued to develop tables summarizing online resources for diabetes health professionals. METHODS Using Internet search engines, each Web site identified for this project met the following criteria: (1) accurate and valid site content based on widely accepted genetic texts, (2) credibility of the organization that maintained the Web site, (3) ease of navigation, and (4) provision of continuing education credits. PubMed was used to find journal articles using similar criteria. RESULTS There were 33 Web sites on genetic education for diabetes health professionals that met the inclusion criteria. The literature search identified 36 articles regarding the importance of genetic education for nurses and other health professionals, as well as information regarding genetics and diabetes. CONCLUSIONS Valid and credible information on genetics and type 1 diabetes is available for diabetes health professionals on the Internet and in the medical literature.

2 9 6 2 Manthei, Siminerio, Conley, et al Volume 30, Number 6 November/December 2004 type 1 diabetes is an autoimmune disease that occurs in genetically predisposed individuals. Although the disease typically manifests during childhood and adolescence, it can develop at later ages as well. Several ongoing studies are examining the natural history of diabetes beginning at birth (eg, the Diabetes Autoimmunity Study in the Young [DAISY] in Colorado, 1,2 and the Prospective Assessment in Newborns of Diabetes Autoimmunity [PANDA] in Florida and Georgia 3 ). These investigations focus on infants from the general population who screen positive for HLA-DQ alleles that are associated with an increased risk for type 1 diabetes. The Trial to Reduce IDDM in the Genetically At Risk (TRIGR) Study 4,5 is also enrolling infants who are identified by genetic testing of newborns in families where there is already an affected first-degree relative. Parents of babies who have a first-degree relative with type 1 diabetes and who also carry high-risk HLA-DQ alleles are invited to participate in this primary prevention trial that involves a nutritional intervention. Diabetes educators, nurses, and other health professionals who care for families with type 1 diabetes and/or recruit families for such investigations may be responsible for providing information regarding genetics and/or obtaining informed consent. Because genetic studies can impact study participants, as well as other family members, it is crucial that accurate information be conveyed in a meaningful way. However, many nurses and diabetes educators have never received formal training in human genetics and are unaware of state-ofthe-art information regarding genetic testing for type 1 diabetes. Thus, they may not be able to adequately answer questions about the rational for genetic testing or what it means to have a child at high or low risk for type 1 diabetes. Having an understanding of genetic testing is particularly important given that there is currently no medical approach to prevent type 1 diabetes. Although our understanding of the genetics of this multifactorial disorder is incomplete, it is constantly evolving. There is considerable information currently available to nurses and diabetes educators, through informal or continuing education opportunities, that can improve their knowledge about the genetics of type 1 diabetes. Those interested in formal training can also serve as genetic counselors for affected families and assist them in understanding how type 1 diabetes is inherited. This information will also facilitate the informed consent process for families who enroll in research studies. The Conference on Behavioral Science Research in Diabetes, 6 sponsored by the National Institutes of Health (NIH), also emphasized the need to provide accurate risk information; maximize the benefits of determining risk status; minimize distress during risk notification; and educate children, families, and health professionals regarding genetic testing for type 1 diabetes. At the present time, these recommendations are being followed only in a research environment, as proposed by the American Diabetes Association (ADA). 7 However, the NIH-sponsored conference recommendations are also echoed in the final Report of the Task Force on Genetic Testing, 8 which underscored the importance of developing genetics curricula for schools of nursing, public health, and social work; medical schools; and residency training programs. These recommendations directly apply to diabetes educators and nurses who care for families with type 1 diabetes and need access to up-to-date information regarding the genetics of the disease. Although a plethora of genetic information is available on the World Wide Web, it can be difficult to find sites that provide accurate and appropriate information for health professionals. For example, a search of the word genetics using Internet search engines such as Google ( Yahoo ( and MSN ( revealed over 6 million sites. Peer-reviewed literature can also provide useful information on genetics for health professionals. PubMed ( nih.gov/) is an excellent resource for finding journal articles pertaining to genetics. However, many of these are disease specific and relate to research findings rather than genetic education. We reviewed and critiqued genetic education Internet sites and peer-reviewed literature that would be most appropriate for diabetes educators and nurses working with families with type 1 diabetes in a clinical

3 Manthei, Siminerio, Conley, et al Volume 30, Number 6 November/December Table 1. Web Sites That Provide Genetic Information for Health Professionals Organization Web-Site Address (URL) Description American Academy of Family Physicians American Nurses Association* American Society of Human Genetics Association of Professors of Human or Medical Genetics: National Coalition for Health Professionals Education in Genetics Centers for Disease Control and Prevention, Office of Genomics and Disease Prevention Training and Education Center for Genetic Education in Sydney, Austrailia Children with Diabetes Cold Spring Harbor Laboratory, Dolan DNA Learning Center, Image Archive on the American Eugenics Movement Columbus Networks Freising-Weihenstephan Genetic Education Materials Database Genetics Education and Counseling Program, University of Pittsburgh core.html mod170/cegntoc.htm URL=uniform resource locator. *Continuing education (CDE) credits available shtml guidelines.htm training.htm Genetics2003/factSheets/34.asp d_0n_500.htm eugenics/ genglos.html GEMDatabase/index.asp edugene/public/html/resource/ index2.html Provides a list of what a family practice resident should know about medical genetics Provides CE courses (eg, Genetic Care An Historical Perspective on Genetic Care) for nurses to learn about the history of genetic care, the role of nurses in genetic care, and the implications of genetic care for nursing practice; CE credits (2 contact hours) available for a fee Serves as an educational resource with links to informational sites on genetics Provides a list of information that health professionals should know about genetics to better care for patients Provides a list of online presentations, including slide shows, videos, lectures, and audio clips, geared toward children K-17 years old and health professionals; also includes a list of training opportunities in the field of genetics, a list of core competencies in genetics essential for all healthcare professionals, and a public health workforce genomic competencies list Provides a detailed explanation of the genetics of diabetes along with links designed for professionals, students, and patients Provides information about studies being conducted in type 1 diabetes, including links to study Web pages Provides historic reports, articles, charts, and pedigrees considered scientific fact in their day; also includes recently written historic articles detailing the events leading up to legislation condoning eugenic practices and the events after this legislation led to banning of eugenic practices Provides links to Web sites of professional organizations Serves as a hypermedia glossary of genetic terms; the number of terms is relatively short but the site can be useful for a quick search for basic genetics terminology Provides a list of public health genetics policy documents and clinical genetics educational materials; these documents and materials are listed as hyperlinks that route the user to pages that will say if the material is available; some of the material is not free; a detailed search of the database can be performed to find specific sites of interest Provides many links to sites of interest to genetic counselors, medical geneticists, and clinical geneticists continued on page 964

4 9 6 4 Manthei, Siminerio, Conley, et al Volume 30, Number 6 November/December 2004 Table 1. Web Sites That Provide Genetic Information for Health Professionals (continued) Organization Web-Site Address (URL) Description Genome News Network whats_a_genome/chp1_1_1.shtml Provides an online book (What s a Genome?) about genetics in a simple, easy-to-understand format GlaxoSmithKline: Genetic Provides links to professional meetings, courses, workshops, and conferences; limited content for genetic education International Society of Nurses in Genetics Johns Hopkins University, Online Mendelian Inheritance in Man (OMIM) isong.html URL=uniform resource locator. *Continuing education (CDE) credits available. Provides information specifically for nurses working in the field of genetics; the mission is to foster scientific, professional, and personal development of members in the management of genetic information Serves as a database for information on genetic conditions; excellent resource for text, graphics, and pertinent links for almost all known human genetic disorders Joslin Diabetes Center* Provides an overview of diabetes, information on managing diabetes, professional education, research, Joslin s local and national services, employment opportunities, and fundraising March of Dimes* National Coalition for Health Professional Education in Genetics* National Human Genome Research Institute professionals/682.asp Provides online education modules, lecture series, and online curricula in genetics for physicians; opportunities exist for continuing education credits for professionals and researchers but can be difficult to find Provides presentations from annual meetings, educational resources (some CDEs), core competencies in genetics for healthcare providers, and other useful resources Provides information for teachers of grades K-12 as well as professional training and career development National Institutes of Health Serves as a search engine that provides a ranked listing of useful Web resources related to the search terms National Institutes of Health Office of Rare Diseases National Newborn Screening and Genetics Resource Center National Society of Genetic Counselors Oncology Nursing Society Overlake Medical Library Type 1 Diabetes Genetics Consortium genetics/primary_care.htm GeneticsToolkit.xml medical.htm#genetics Provides links to resources pertaining to over 7000 rare diseases Provides materials (PDF documents) for training primary care workers in genetics Provides information about genetic counseling and sources of genetic education Provides a genetics in cancer tool kit for educating nurses in the genetics of cancer Provides links to other informational sites Serves as a resource for organizing international efforts to identify genes that determine an individual s risk of type 1 diabetes continued on page 966

5 Manthei, Siminerio, Conley, et al Volume 30, Number 6 November/December or research setting. This article provides a summary of the resources that are likely to be of greatest benefit to diabetes healthcare professionals. A companion article on similar Web-based resources for consumers, Genetics and Type 1 Diabetes: Online Resources for Patients, also is published in this issue of The Diabetes Educator. METHODS Three Internet search engines Google, MSN, and Yahoo were used to identify sites using the keywords health professionals, genetics, diabetes, and education. Search terms were clustered, such as professionals and genetics and diabetes and education, to decrease the number of sites found and to provide more focused results. Each Web site identified by the search was ranked according to the following criteria: (1) accurate and valid site content based on textbooks, such as Thompson and Thompson Genetics in Medicine, 9 as well as a panel of experts in the Department of Human Genetics at the Graduate School of Public Health (ERM, ASF), the School of Nursing (YC, DCP, BS, JSD), University of Pittsburgh, and the University of Pittsburgh Medical Center (LS); (2) credibility of the organization that maintained the Web site; (3) ease of navigation; and (4) provision of continuing education credits. Sites were excluded if these criteria were not met. The inclusion of criteria were based on guidelines for assessing information quality on the Internet 10 pertaining to issues such as credibility, content, disclosure of purpose of the site, usefulness of links, Web site design ensuring effectiveness of delivery, and interactivity in the form of a route for user feedback (available at org/docs/criteria.html). Another site provided the Information Quality (IQ) Tool, which assesses the content and layout of the Web site through questions that are answered by the person using the site (available at To use the IQ Tool, the site address is entered, which opens the page along with a list of questions to answer. The user navigates the selected site to answer the assessment questions. Once completed, the IQ Tool provides a report that contains a review of answers, a score, and information on the importance of what was missing from the site, such as a list of authors and their credentials and whether their credentials pertain to the topic of the Web site. The score is not a measure of quality but rather indicates how well the Web site provided answers to the IQ Tool questions. The portion of the score that is most informative is the detailed report on what was missing from the Web site; this section tells why the answers to the questions are important. In this way, the IQ Tool provides a way of assessing the quality of a Web site. areview of the literature on genetic education for health professionals was also conducted, with a special emphasis on articles describing Web-based education. The online journal search engine, PubMed (available at was used to identify relevant journal articles. The content of each article was reviewed for validity and accuracy of information, as well as for whether it provided useful information for health professionals. RESULTS Web-Site Review The search for Web sites on genetic education for diabetes health professionals identified 33 comprehensive sites that met the inclusion criteria. These Web sites are listed in Table 1, which includes the site address or uniform resource locator (URL), a brief description of the site, and whether the information regarding diabetes or continuing education (CE) credits was provided. Most of the sites had credible sources, valid information, and were easily navigated. Literature Review The search of literature published over the last 5 years identified 22 articles regarding the importance of genetic education for nurses (Table 2) and for other health professionals, such as diabetes educators (Table 3). Three articles were identified that provided genetic education information, 2 of which could be used to obtain continuing education credits (Table 4). Eleven articles were identified that discussed how to use the Internet and associated databases, and other resources that may be of use to primary care providers (Table 5).

6 9 6 6 Manthei, Siminerio, Conley, et al Volume 30, Number 6 November/December 2004 Table 1. Web Sites That Provide Genetic Information for Health Professionals (continued) Organization Web-Site Address (URL) Description U.S. Department of Energy Provides links to a variety of topics on genetics category.cfm?category=education University of Iowa Health Care: Virtual Hospital Serves as a search engine to find informational documents within the site University of Iowa Virtual Children s Hospital University of Kansas Medical Center University of Kansas Medical Center University of Washington School of Medicine, Gene Clinics URL=uniform resource locator. *Continuing education (CDE) credits available. ClinicalGenetics/Contents.html soclist.html Provides information on clinical genetics in a textbook style: Clinical Genetics: A Self-Study for Health Care Providers includes 4 lessons (Lesson 1, Genetic Concepts and Genetic Tests; Lesson 2, Assessment Strategies How to Identify Families Who Might Benefit from Genetic Services; Lesson 3, Genetic Services What Are They; Lesson 4, Making a Referral) and 5 appendices (Reasons for Referral, Glossary of Terms and Abbreviations, Annotated Bibliography of Resources, Educational Tools and Resources, and State Services) Provides information for genetics professionals, including clinical, research, and educational resources for genetic counselors, clinical geneticists, and medical geneticists Provides a list of professional societies and links to their Web sites Provides reviews about genetic conditions and laboratories that do genetic testing; excellent source of information for clinical health professionals DISCUSSION The Human Genome Project recently announced that the sequence of the entire human genome is now complete. 11 This advance will bring about many new discoveries in the field of genetics that diabetes educators and other health professionals will need to access. As the field of genetics expands and the technology and assays available for genetic testing become more reliable, faster, and more easily used, the genetic knowledge that nurses and other healthcare professionals need will only increase. Finding resources for the appropriate level of genetic education can be a challenge. The Internet provides an easy and convenient way to obtain genetics information online for quick reference. However, diabetes health professionals need resources that assist them in obtaining the type of genetic education that is relevant for their needs. The tables prepared from this extensive search of Web sites and the medical literature are valuable resources for diabetes educators and nurses who want to know about genetics and type 1 diabetes. The goal of this review was to create a relevant and timely resource for diabetes health professionals. This resource is important because it is impossible for health professionals without formal training in genetics to review and critique existing Internet sites for content, accuracy, etc, and identify those that best meet their needs. The tables prepared for this review provide a summary of a wide range of excellent genetic information Web sites that will be useful for diabetes health professionals. The literature search revealed several articles describing how to access and use medical genetics information on the Internet. These articles provide a solid base and an alternative resource for diabetes health professionals who are not particularly computer savvy. A plethora of information regarding the importance of educating health professionals in genetics was also found. The articles address the need for information regarding the genetics of type I diabetes to be readily available and easy to access using the World Wide Web. Although few articles actually provide genetic education, there are many articles describing genetic diabetes research. The research findings on the genetics of type 1 diabetes are extensive but easily accessed through PubMed and other medical journal databases. These

7 Manthei, Siminerio, Conley, et al Volume 30, Number 6 November/December Table 2. Literature Pertaining to the Importance of Genetic Education for Nurses Citation Burton H, Stewart A. From Mendel to the Human Genome Project: the implications for nurse education. Nurse Educ Today. 2003;23: Jenkins JF, Dimond E. Preparing for the future through genetics nursing education. J Nurs Scholar. 2001;33: Jenkins JF, Prows C. Recommendations for educating nurses in genetics. J Prof Nurs. 2001;17: Kenner C. National Coalition for Health Professional Education in Genetics. AACN Clin Issues. 1998;9: Lashley. Genetics in nursing education. Nurs Clin North Am. 2000;35: Lea DH, Anderson G. A multiplicity of roles for genetic nursing: building toward holistic practice. Holist Nurs Pract. 1998;12: Lea DH, Feetham SL. Genomic-based health care in nursing: a bidirectional approach to bringing genetics into nursing s body of knowledge. J Prof Nurs. 2002;18: Monsen RB, Anderson G. Nursing education and genetics. Miles to go before we sleep. Nurs Health Care Perspect. 2000;21: Terry L, Cedar SH. An overview of education and new genetics. Nurs Stand. 2001;15: Description Describes how scientific discovery will impact nursing education; covers topics such as classical and molecular genetics and the Human Genome Project and how its discoveries will change nursing practice Presents important factors for the education of nurses in genetics through a survey of 356 nurses (228 identified as experts in genetics and 128 identified as potential users of genetic education); 398 items from this survey were identified as potential consequences of genetic education; provides a template for genetic education programs for nurses Describes the importance of nurses having an education in genetics and recommends what information nurses should be taught Describes the goals of the National Coalition for Health Professional Education in Genetics (NCHPEG); provides an overview of the relationship of NCHPEG to acute and critical care nurses Describes the importance of genetic education for nurses, including genetic roles and necessary genetic knowledge for nurses Identifies the roles of nurses in genetic nursing Explores how nursing has integrated human and clinical genetics into practice and scholarship; includes a review of nursing education literature and a survey of 15 genetics nursing and nursing leaders on such topics as key national initiatives, genetics research training programs, and genetics education models; presents recommendations on how to incorporate genetic education that builds on previous work into nursing education programs Describes a study in which 42 state boards of nursing (SBN) answer the questions What are the SBN requirements for genetic content in basic nursing education programs? and Is genetics included in nursing course textbooks? and presents conclusions that genetics is covered in nursing curricula but is not recognized as an important area of focus (meaning that clinicians, educators, and researchers have limited exposure to genetics) Discusses the importance of educating nurses about genetic developments for the purpose of applying the knowledge to practice; provides useful Internet sites as resources journal articles can provide interested diabetes health professionals with more detailed basic science information about the genetics of type 1 diabetes. Diabetes healthcare professionals who understand basic genetics can also conduct a more thorough assessment of family health, which includes complications of diabetes. The ability to take a detailed family history and to identify potential inherited patterns of disease-associated symptoms is critical. In this capacity, diabetes healthcare professionals have the opportunity to serve as a resource for affected families. In addition to providing genetic information, the purpose of this type of counseling role is to provide families with emotional support and assist them in obtaining the specific genetic counseling that they need. This role is a natural extension of the responsibilities of diabetes educators, who are formally trained in health communication.

8 9 6 8 Manthei, Siminerio, Conley, et al Volume 30, Number 6 November/December 2004 Table 3. Literature Pertaining to the Importance of Genetic Education for Health Professionals Citation Bell J. The new genetics in clinical practice. BMJ. 1998;316: Burke W, Emery J. Genetics education for primary-care providers. Nat Rev Genet. 2002;3: Burton H, Shuttleworth A. Genetics education for midwives. Midwives (Lond). 2003;6: Collins FS, Bochm K. Avoiding casualties in the genetic revolution: the urgent need to educate physicians about genetics. Acad Med. 1999;74: Collins FS. Preparing health professionals for the genetic revolution. JAMA. 1997;278: Fetters MD, Doukas DJ. Family physicians perspectives on genetics and the Human Genome Project. Clin Genet. 1999;56: Fineman RM. Qualifications of public health geneticists? Community Genet. 1999;2: Greendale K, Pyeritz RE. Empowering primary care health professionals in medical genetics: How soon? How fast? How far? Am J Med Genet. 2001;106: Kinmonth AL, Reinhard J. The new genetics. Implications for clinical services in Britain and the United States. BMJ. 1998;316: Kolb SE, Aguilar MC. Genetics education for primary care providers in community health settings. J Community Health. 1999;24: Description Reviews the ways in which genetic information impacts clinical practice Describes the need for genetics education of primary care providers and current efforts in genetics education in the United States and the United Kingdom; also provides recommendations regarding how to educate primary care providers in genetics Describes a strategy to meet the educational needs of midwives and other health professionals being asked to take on new roles in genetics Discusses how the Human Genome Project will impact health care and how healthcare providers will need to be educated to provide the best possible patient care Discusses the implications of having healthcare providers who are competent in genetics; emphasizes that there will not be enough genetic counselors and medical geneticists in the future to meet the demands for testing and services Describes a study to determine family physicans attitudes and beliefs about human genetics research and the Human Genome Project; results show that study participants did not feel that genetics has a significant impact on their practices but major clinical changes are expected in the future; many study participants felt there have been inadequate educational opportunities to learn about genetics Describes the knowledge base, skills, and attitudes needed to be a public health geneticist Discusses the importance of medical genetics in clinical outcomes and the likelihood that positive attributes of medical genetics will be preserved in a primary care model of medical genetics service delivery Describes the importance of having primary care teams with skills to assess genetic risk of disease; discusses the implications of gene testing and controlled access to specialist services; presents guidelines for referral to consultation and counseling; summarizes how to integrate genetic risk assessment into medical practice Discusses the effects of a genetics education program on the knowledge and attitudes of primary care providers in community health settings; explains how subjects had inadequate knowledge before an education program was completed and a significant increase in knowledge after the education program was completed; presents authors conclusions that primary care providers can learn complex materials and new skills to assist their patients in a short period of time Thus, they can help families make informed choices about genetic testing, treatment, and potential participation in research, and assist families in becoming better prepared should an at-risk child actually develop type 1 diabetes. Equally important is the role of diabetes health providers in identifying resources that will aid in patient education, which now includes the basic concepts of genetics and genetic risk for type 1 diabetes. Several of the genetics education Web sites identified for diabetes health professionals include programs for obtaining continuing education credit, which is required to maintain certifications. The School of Nursing at the University of Pittsburgh developed Webbased genetics education modules for oncology nurses that complement an introductory course in human genetics that is taught to second-year nursing students

9 Manthei, Siminerio, Conley, et al Volume 30, Number 6 November/December Table 3. Literature Pertaining to the Importance of Genetic Education for Health Professionals (continued) Citation Lapham EV, Kozma C. The gap between practice and genetics education of health professionals: HuGEM survey results. Genet Med. 2000;2: Mountcastle-Shah E, Holtzman NA. Primary care physicians perceptions of barriers to genetic testing and their willingness to participate in research. Am J Med Genet. 2000;94: Core Competency Working Group of the National Coalition for Health Professionals. Recommendations of core competencies in genetics essential for all health professionals. Genet Med. 2001;3: Description Describes how this study determined the genetic education needs of dietitians, occupational therapists, physical therapists, psychologists, speech-language specialists, and social workers; presents results showing that most study participants worked with clients with genetic conditions but lacked the knowledge and skills needed to deal with these clients Describes the barriers and motivations to appropriate diffusion of genetic services into primary care practice and the willingness of primary care providers (PCPs) to participate in clinical studies to assess the safety and effectiveness of emerging genetic technolgies (study involved interviews of 60 PCPs and written surveys of 157 PCPs); presents authors conclusions that most physicians do not see genetics as important in their practice but anticipate greater need in the future; also discusses sufficient physician interest in participation in research to allow large-scale, collaborative, practice-based evaluation Presents the committee report of the Core Competency Working Group of the National Coalition for Health Professional Education in Genetics, which describes the genetics knowledge, skills, and attitudes needed by all health professionals to provide effective health care to patients Table 4. Literature Pertaining to Providing Genetic Education Citation Description Lea DH. What nurses need to know about Addresses basic genetics, mitosis and meiosis, mutations, inheritance patterns, genetics. Dimens Crit Care Nurs. multifactorial conditions, chromosomal abnormalities, genetic assessment, ethics, 2002;21:50-61.* and indications for making a referral; questions at the end of the article can be submitted for continuing education credits Monsen RB, Anderson G. Continuing Outlines and highlights the importance of incorporating new genetic advances into education for nurses that incorporates clinical practice, research, and education; describes a survey of 43 nursing specialty genetics. J Contin Educ Nurs. 1999;30: organizations to determine educational offerings in genetics and presents 20-24, * conclusions that alert leaders in continuing education about the need for education in genetics Pinsky L, Pagon R. Genetics through a Describes why genetics is important for primary care physicians through use of primary care lens. West J Med. 2001; case examples; teaches how to use the family history in risk assessment with 175: pedigrees and how to evaluate the genetic information that is important for risk assessment *Continuing education (CE) credits available.

10 9 7 0 Manthei, Siminerio, Conley, et al Volume 30, Number 6 November/December 2004 Table 5. Literature Providing Information on Use of the Internet and Sites Available for Primary Care Providers Citation Hetteberg C, Trangenstein PA. Genetics and the World Wide Web: an introduction. Neonatal Networks. 1999;18:9-13. Osborne LR, Lee JR. Resources for human genetics on the World Wide Web. Mol Med Today. 1997;3: Ouellette F. Internet resources for the clinical geneticist. Clin Genet. 1999;56: Pagon RA, Pinsky L. Online medical genetics resources: a US perspective. BMJ. 2001;322: Peters R, Sikorski R. Navigating to knowledge. Tools for finding information on the Internet. JAMA. 1997;277: Sikorski R, Peters R. Genomic medicine. Internet resources for medical genetics. JAMA. 1997;278: Sikorski R, Peters R. Internet anatomy 101. Accessing information on the World Wide Web. JAMA. 1997;277: Sikorski R, Peters R. Medical literature made easy. Querying databases on the Internet. JAMA. 1997;277: Stewart A, Haites N. Online medical genetics resources: a UK perspective. BMJ. 2001;322: Trangenstein PA, Hetteberg C. Genetics on the World Wide Web. AACN Clin Issues. 1998;9: van Steensel MA, Winter RM. Internet databases for clinical geneticists an overview. Clin Genet. 1998;53: Description Presents an overview of the World Wide Web, offers examples of genetics-related Web sites, and illustrates their applicability to neonatal nursing Describes Internet resources for the Human Genome Project, education, and human genetic diseases, and sites that the authors found informative and original Reviews resources (relevant to the clinical geneticist) from the National Center for Biotechnology Information at the National Library of Medicine at the National Institutes of Health Describes Web sites for genetics professionals, primary care providers, and patients, including what the authors felt was missing; focuses on health professionals in the United States Describes how to find information on the Internet, covering such topics as finding Web pages, newsgroup postings, and people Describes specific Web sites, many of which are useful for health professionals as well as for patients and the general public Describes the Internet and how to use it in a simple, straightforward manner; covers basic terminology such as HTTP and URL, and what the Internet is Describes how to use databases and extract the desired information from these databases; helpful for those trying to do a literature search Describes sites for genetics professionals; sites for doctors and other primary care professionals; sites for patients, families, and caregivers; sites for public health professionals and policymakers; provides genetics newsletters, with a focus on health professionals in the United Kingdom Describes a variety of useful genetics-related Web sites for health professionals interested in genetics; explains how authors selected sites and searched the Web Summarizes databases that are important to clinical geneticists, including databases for the procurement of dysmorphologic information and diagnosis; also describes how to find research information on the Web, keep up with recent developments, and use search engines to find information (Y. Conley, written communication, January 2003). The Web-based version of the course follows the content of the classroom component but also contains specific modules related to cancer genetics. These modules are available to oncology nurses at other institutions and provide an excellent example of the use of the Internet to formally educate nurses and health professionals about the field of genetics. Web-based programs are also easy to update, which is particularly important for a field such as genetics, where new information is being introduced regularly. The development of this program has prompted our group to construct a Web site specifically targeted to diabetes health professionals. The goal of this site, as well as the tables prepared for this manuscript, is to teach diabetes educators and nurses about the genetics of type 1 diabetes for the purposes of increasing their knowledge and helping them become better healthcare providers. The authors offer special thanks to Dr. Massimo Trucco and Miss Patricia Schmitt.

11 Manthei, Siminerio, Conley, et al Volume 30, Number 6 November/December R E F E R E N C E S 1. Norris JM, Beaty B, Klingensmith G, et al. Lack of association between early exposure to cow s milk protein and beta-cell autoimmunity. Diabetes Autoimmunity Study in the Young (DAISY). JAMA. 1996;276: Rewers M, Norris JM, Eisenbarth GS, et al. Betacell autoantibodies in infants and toddlers without IDDM relatives: Diabetes Autoimmunity Study in the Young (DAISY). J Autoimmunity. 1996;9: Carmichael SK, Johnson SB, Baughcum A, et al. Prospective Assessment in Newborns of Diabetes Autoimmunity (PANDA): maternal understanding of infant diabetes risk. Genet Med. 2003;5: Akerblom HK, Savilahti E, Saukkonen TT, et al. The case for elimination of cow s milk in early infancy in the prevention of type 1 diabetes: the Finnish experience. Diabetes Metab Rev. 1993;9: Trial to Reduce IDDM in the Genetically at Risk (TRIGR). Available at: Accessed January Glasgow RE, Hiss RG, Anderson RM, et al. Report of the Health Care Delivery Work Group: behavioral research related to the establishment of a chronic disease model for diabetes care. Diabetes Care. 2001; 24: Prevention of type 1 diabetes mellitus. Diabetes Care. 2001;24(suppl 1): S Task Force on Genetic Testing (US), Holtzman NA, Watson MS. Promoting safe and effective genetic testing in the United States: Final Report of the Task Force on Genetic Testing. Baltimore, Md: Johns Hopkins University Press; Nussbaum RL, McInnes RR, Willard HF, Boerkoel CF, Thompson MW. Thompson & Thompson Genetics in Medicine. 6th ed. Philadelphia: WB Saunders; Criteria for assessing the quality of health information on the Internet. Am J Public Health. 2001;91: National Human Genome Research Institute (NHGRI). Available at: nhgri.nih.gov/. Accessed January 2003.