AdoptionNCT00057694
The Value of Genetic Information to Adult Adopted Individuals
An observational study of Adoption and Genetic Counseling, run by National Human Genome Research Institute (NHGRI) at 1 site in United States.
Trial 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. Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Adoption, Genetic Counseling
- How many people
- 40 participants
- Where
- 1 siteUnited States
- Study dates
- Apr 2003to Jan 2004
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Who may be able to join
- English-speaking adoptees, over 18 years of age, who were placed in unrelated adoptive families.
Who cannot join
- Adult adoptee that participated in piloting.
Trial locations and contacts
1 site in 1 country.
United States1 site
National Human Genome Research Institute (NHGRI)
Bethesda, Maryland, 20892
About this study
Official title: 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.
Read more
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.
Read the 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.
- Conditions
- Adoption, Genetic Counseling
- Keywords
- Qualitative, Telephone Interviews, Genetic Counseling, Family History, Health Information, Adult Adoptees, Adult Adoptee, Interview
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted7 Apr 2003 (estimated)
- Study startApr 2003
- Study completionJan 2004
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (3)Papers the sponsor has linked to this study.
- Other trials for AdoptionStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Enrolment
- 40 participants
Sponsor and investigators
- Lead sponsor
- National Human Genome Research Institute (NHGRI)
- Sponsor type
- US National Institutes of Health
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT00057694
- Sponsor's protocol ID
- 030144
- Other IDs
- 03-HG-0144
- Status last verified
- Jan 2004
- First submitted
- 5 Apr 2003
- Last updated
- 4 Mar 2008
- Results posted
- No
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.
PubMed 2018032Aumend 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.
PubMed 6723422Bansal 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.
PubMed 10794360
Study at a glance
From the registry record, last updated by the sponsor on 4 Mar 2008. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Genetic Information: Exploring the Value to Adult Adoptees
- ClinicalTrials.gov ID
- NCT00057694
- Acronym / sponsor ID
- 030144
- Conditions
- Adoption, Genetic Counseling
- Keywords
- Qualitative, Telephone Interviews, Genetic Counseling, Family History, Health Information, Adult Adoptees, Adult Adoptee, Interview
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 40 participants
- Lead sponsor
- National Human Genome Research Institute (NHGRI)US National Institutes of Health
- Study start
- Apr 2003
- Study completion
- Jan 2004
- First posted
- 7 Apr 2003 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
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 design
Who may qualify
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
Key inclusion criteria (1 listed)
- English-speaking adoptees, over 18 years of age, who were placed in unrelated adoptive families.
Key exclusion criteria (1 listed)
- Adult adoptee that participated in piloting.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Not reported in the source record.
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 4 Mar 2008.
- Background: PubMed 2018032American 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.
- Background: PubMed 6723422Aumend 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.
- Background: PubMed 10794360Bansal 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.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Adoption and Genetic Counseling, run by National Human Genome Research Institute (NHGRI) at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 1 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 4 Mar 2008. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT00057694, which also lists 3 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 4 Mar 2008.