XIX. Resources

This section will continue to be updated as materials become available.

Most recent update December 2000

American Society of Human Genetics (ASHG) Board of Directors and the American College of Medical Genetics (ACMG) Board of Directors Report: "Points to Consider: Ethical Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents".

ASHG Report "Statement on Informed Consent for Genetic Research," Am. J. Hum Genet., Vol. 59, 1996, pp. 471-474.

Brunger, JW, Murray, GS, O'Riordan M, et al. "Parental Attitudes Toward Genetic Testing for Pediatric Deafness. Am. J. Hum Genet., Vol 76:(6) 1621-1625, Dec. 2000.

Brusky, AL."Making Decisions for Deaf Children Regarding Cochlear Implants: The Legal Ramifications of Recognizing Deafness as a Culture Rather than a Disability." 1995 Wis. L. Rev. 235.

Clayton EW, et. al, "Informed Consent for Genetic Research on Stored Tissue Samples," JAMA Vol. 274, No 22, Dec. 1995, pp. 1786-1792.

Davis DS., "Genetic Dilemmas and the Child's Right to an Open Future" Hastings Center Rep., vol. 27, No.2, Mar-Apr 1997, pp.7-15.

"Deaf Culture: Selected Readings" (#547). Washington DC: Gallaudet University.

"Deafness: A Fact Sheet" (#085) Washington DC: Gallaudet University.

Geller G, et. al., "Genetic Testing for Susceptibility to Adult-Onset Cancer: The Process and Content of Informed Consent, " JAMA Vol. 277, No. 18, May 1997, pp. 1467-1474.

Johnson R E. "Beliefs and Practices in Deaf Education: Magical and Logical." (El Biling"smo de los Sordos), Vol. I, Number 3. 1998(in press). [To be published in translation in Spanish.]

Kelly LP, "Using Silent Motion Pictures to Teach Complex Syntax to Adult Deaf Readers," Journal of Deaf Studies and Deaf Education Vol. 3, No. 3., 1998, pp. 217-230.

Lane H., Hoffmeister R, (contributor), Behan B, Corona M (editor). A Journey into the Deaf- World. San Diego: DawnSign Press, 1996.

McEwen EM and Anoton-Culver H, "The Medical Communication of Deaf Patients" Journal of Family Practice, Vol. 26, No.3, March 1988, pp. 289-291. 1988: 26: 3: 289-291.

National Institute on Deafness and Other Communication Disorders. Americans With Disabilities Act: Combined Health Information Database Resources. Bethesda MD: 1998.

National Institute on Deafness and Other Communication Disorders. Facts About Telecommunications Relay Services. Bethesda MD: 1999. (annual)

"NIDCD Working Group Considerations for Developing and Implementing Genetic Diagnostic Tests for Hereditary Hearing Impairment and Other Communication Disorders" . Rockville, Maryland December 8, 1998.

OHRS Information Sheet #5 "Guidelines for Writing Research Protocols" (rev 5/5/97).

OHRS Information Sheet #6 "Guidelines for Writing Informed Consent Documents" (rev "5/5/97).

OPRR Reports "Protection of Human Subjects: Title 45 Code of Federal Regulations Part 46", Revised June1991.

Padden C, Humphries T (contributor). Deaf in America: Voices from a Culture. Cambridge MA: Harvard University Press, 1996.

Salk Institute "Information regarding the Salk Institute Studies and the Use of Informed Consent With Deaf Subjects".

Schick B, Hoffmeister B, deVilliers P and deVilliers J. "How do ASL skills affect a child's Theory of Mind?: A research study at the California School for the Deaf." [brochure for parents to explain a research study] available from Dr. Schick : Brenda.Schick@colorado.edu

Zazove P and Doukas DJ., "The Silent Health Care Crisis: Ethical Reflections of Health Care for Deaf and Hard-of-Hearing Persons," J of Family Medicine, Vol. 26, June 1994, pp.387-390.

Additional Resources Available from the Registry of Interpreters for the Deaf, Inc.(RID) on Interpreting, Ethics, Interpreting in Medical Settings, Business Practices and Billing Considerations include:

"Business Practices: Billing Considerations." (Doc.#113).

"Code of Ethics." (Doc. #103).

"Interpreters and Interpreter Services." (Doc. #107).

"Interpreting in Medical Settings." (Doc.#119).

"Professional Sign Language Interpreting." (Doc #120).

"Use of a Certified Deaf Interpreter." (Doc #121).

[Document numbers are supplied for Fax-on-demand 1-800-711-3691. Other titles are available. The homepage for RID is www.rid.org.]

Recent Funding Opportunity:

"Studies of the Ethical, Legal and Social Implications for Research Into Human Genetics". Release date: April 29, 1999 . Application Receipt Date: August 31,1999. Information about funding of this RFA will be posted here upon award.

Participating Institutes: National Human Genome Research Institute, National Institute on Deafness and Other Communication Disorders, National Institute of Environmental Health Sciences, National Institute of General Medical Sciences.

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