The Value of Genetic Information to Adult Adopted Individuals

NCT00057694 | Completed

• 2 other identifiers: 03014403-HG-0144
• Study Type: observational
• Target: 40
• Locations: 1 country
• Sites: 1

Brief Summary

This study will explore adult adoptees' perceptions of the potential value of genetic and family history information. Unlike most people, many adopted individuals do not have access to personal or family medical information because of laws and practices that prevent disclosure. Research suggests that adopted individuals are interested in obtaining this information about their biological families. This study will examine adoptees':

• Satisfaction with the amount of genetic information they have, their motivations for wanting more information, and when it becomes important for them to have this information.
• Perceptions of the degree to which they believe genetics and family history influence various traits and conditions. The study will also explore adoptees' interactions with health care providers so that recommendations can be developed for helping genetic counselors meet the needs of these individuals. English-speaking adoptees 18 years of age and older are eligible for this study. Those enrolled will participate in a one-time telephone interview that will take about 45 to 60 minutes. The interview will obtain demographic information, such as the adoptee's age, sex, racial and ethnic background, marital status, and education level, and will include questions in the following areas:
• Personal adoption story;
• Perceptions of the role of the biological family history and medical information and its importance and usefulness;
• Perceptions of the influence of genetics and family history on health;
• Reproductive history and pregnancy concerns related to being adopted;
• Experiences and interactions with health care providers related to adoption;
• Suggestions for improving interactions with health care providers.

Conditions

Adoption; Genetic Counseling

Keywords

Qualitative; Telephone Interviews; Genetic Counseling; Family History; Health Information; Adult Adoptees; Adult Adoptee; Interview

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

• English-speaking adoptees, over 18 years of age, who were placed in unrelated adoptive families.

You may not qualify if:

• Adult adoptee that participated in piloting.

Sponsors & Collaborators

• National Human Genome Research Institute (NHGRI): lead

Study Sites (1)

National Human Genome Research Institute (NHGRI)

Bethesda, Maryland, 20892, United States

Location

Related Publications (3)

• American Society of Human Genetics Social Issues Committee report on genetics and adoption: points to consider. Am J Hum Genet. 1991 May;48(5):1009-10. No abstract available.

  PMID: 2018032 BACKGROUND

• Aumend SA, Barrett MC. Self-concept and attitudes toward adoption: a comparison of searching and nonsearching adult adoptees. Child Welfare. 1984 May-Jun;63(3):251-9.

  PMID: 6723422 BACKGROUND

• Bansal A, Critchfield GC, Frank TS, Reid JE, Thomas A, Deffenbaugh AM, Neuhausen SL. The predictive value of BRCA1 and BRCA2 mutation testing. Genet Test. 2000;4(1):45-8. doi: 10.1089/109065700316462.

  PMID: 10794360 BACKGROUND

Study Design

• Study Type: observational
• Sponsor Type: NIH

Study Record Dates

• First Submitted: April 5, 2003
• First Posted: April 7, 2003
• Study Start: April 1, 2003
• Study Completion: January 1, 2004
• Last Updated: March 4, 2008

Record last verified: 2004-01

Locations

US (1)