Learning Objectives for the Educational Program

Knowledge:
Participants in the educational program will develop a basic understanding of:

• basic human genetics terminology.

• patterns of inheritance (both mendelian and nontraditional) and the importance of family history.

• how identification of genetic variation (forms of hearing loss) facilitates development of prevention, diagnosis and treatment.

• the clinical and molecular characteristics of the major forms of syndromic and nonsyndromic hearing loss.

• the influence of race, ethnicity, mating structure of the population and environmental factors that modify or influence expression of genes for deafness.

• the potential physical and/or psychosocial benefits, limitations, and risks of genetic information for individuals, family members and communities.

• the resources available to meet the needs of clients seeking genetic information and services.

• the components of the genetic counseling process and indications for referral of individuals with hearing loss to genetic specialists, as well as their own professional role in provision, follow-up, and quality of genetic services.

• the ethical, legal and social issues related to genetic testing for genetic conditions related to deafness or hearing loss and recording of genetic information in such cases.

• the history of societal misuse of human genetic information (eugenics) and its historical impact on the deaf community.

• the concepts related to the genetics of hearing loss which are most important to convey to their own students and creative methods for conveying those concepts.

Skills:
Upon completion of the educational program, participants should be able to:

• explain basic concepts of probability and the influence of genetic factors in causing hearing loss.

• gather basic family history information, identify individuals and families that would benefit from genetic services, and prepare clients and families for what to expect from the genetic evaluation and counseling process.

• educate individuals about the availability of genetic testing for hearing loss and provide basic information about the potential risks, benefits and limitations of genetic testing for hearing loss.

• safeguard privacy and confidentiality of genetic information of clients and families to the extent possible and respect the choices that clients and families intend to make about genetic testing.

• identify sources of credible, current information about genetics for self, client, students and colleagues.

• educate their own students and professional peers about key genetic concepts relative to hearing loss and related ethical and policy issues.

Attitudes:
Upon completion of the educational program, all participants should be able to:

• recognize philosophical, cultural and ethical perspectives influencing utilization of genetic information and services, especially those related to the deaf and hearing communities

• appreciate the sensitivity of genetic information, and the need for privacy and confidentiality

• seek coordination and collaboration with an interdisciplinary team of health professionals

• recognize the limitations of their own genetic expertise and seek the help of genetic professionals as needed to educate their own students, peers and clients

• recognize when personal values and biases with regard to ethical, social, cultural, religious and ethnic issues may impact or interfere with care provided to clients and families

• support client-beneficial policies, including access, choice to utilize genetic services, genetic privacy and non-discrimination

• develop the skills to convey these basic attitudes to their own students and professional peers

• recognize that information about the genetics of deafness is not a static body of knowledge and develop effective personal strategies for keeping up with this rapidly changing field