The Value of Genetic Information to Adult Adopted Individuals

Genetic Information: Exploring the Value to Adult Adoptees

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.

Study Overview

• Status: Completed
• Conditions: Genetic Counseling; Adoption

Detailed Description

In contrast to the majority of the population, many adopted individuals do not have access to personal or familial medical information because of laws and practices that prevent disclosure. A body of research has suggested however that adopted individuals are interested in obtaining this information regarding their biological families. The proposed study broadly aims to explore adult adoptees' perceptions regarding the potential value of genetic and family history information. Specifically it will investigate adoptees' motivations for obtaining the information, their perceptions regarding the influence of genetics on health, and their experiences with healthcare providers related to adoption and medical information. These objectives will be addressed in telephone interviews with English-Speaking adult adoptees (over the age of 18 years) that were placed in unrelated adoptive families. A semi-structured guide for the telephone interviews consists of a series of open-ended questions that explore the objectives of the study. We hope to collect data on about 40 individuals. The data will be subject to coding for thematic analyses to identify recurring trends and themes. This study has implications for genetic counselors as the findings may guide the development of appropriate educational messages and counseling recommendations for adopted individuals related to their genetic and family history information.

• Study Type: Observational
• Enrollment: 40

Contacts and Locations

Study Locations

• United States
  • Maryland
    • Bethesda, Maryland, United States, 20892
      • National Human Genome Research Institute (NHGRI)

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

Description

INCLUSION CRITERIA:

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

EXCLUSION CRITERIA:

Adult adoptee that participated in piloting.

Study Plan

How is the study designed?

Collaborators and Investigators

• Sponsor: National Human Genome Research Institute (NHGRI)

Publications and helpful links

General Publications

• 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.
• 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.
• 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.

Study record dates

Study Major Dates

• Study Start: April 1, 2003
• Study Completion: January 1, 2004

Study Registration Dates

• First Submitted: April 5, 2003
• First Submitted That Met QC Criteria: April 4, 2003
• First Posted (Estimate): April 7, 2003

Study Record Updates

• Last Update Posted (Estimate): March 4, 2008
• Last Update Submitted That Met QC Criteria: March 3, 2008
• Last Verified: January 1, 2004

More Information

Terms related to this study

• Keywords: Qualitative; Health Information; Interview; Genetic Counseling; Family History; Telephone Interviews; Adult Adoptees; Adult Adoptee
• Other Study ID Numbers: 030144; 03-HG-0144