The Value of Genetic Information to Adult Adopted Individuals
The Value of Genetic Information to Adult Adopted Individuals
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.
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.
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.