Am. J. Hum. Genet. 46:208-214, 1990
ASHG ACTIVITIES RELATIVE TO EDUCATION Heredity and Adoption: A Survey of State Adoption Agencies Diane Plumridge,* Joan Burns,T and Nancy L. Fishert
_G HUIVIAN
Pacific Northwest Regional Genetics Group, Child Development and Rehabilitation Center, Oregon Health Sciences University, Portland; TWaisman Center, University of Wisconsin-Madison; and tVirginia Mason Clinic, Seattle
*EDUCATION
Summary A subcommittee of The Social Issues Committee of The American Society of Human Genetics (ASHG), aware of the growing interest in the implications of inheritance and adoption, in 1987 began surveying the 50 states' and Washington DC's public adoption agencies regarding this issue, and it completed the survey in 1988. In 1987, two surveys obtained data on each state's legal requirements for obtaining genetic information and on what each public adoption agency collected as genetic history. These results were presented in a poster at the 1987 ASHG annual meeting in San Diego. In 1968, a questionnaire was sent to the same agencies to elicit opinions as to whether adoption agencies should systematically collect genetic information to share with the adoptive family and adoptee, whether legislation should be mandated to collect such information, and whether genetic education programs should be developed and implemented for adoption-agency staff. On the basis of responses to the 1988 questionnaire, it was concluded that there is an interest in developing a uniform set of genetic information which should be part of a child's adoption record and that there is a need for genetic education programs for adoption workers. Responses to the desirability of mandating legislation for this purpose were less consistent.
Introduction One of every seven couples is infertile and may consider adoption as one alternative to natural parenthood. In recent years, adoption agencies have become increasingly sensitive to the importance of a known genetic history for the adoptee, the adoptive parents, and the biological parents (Omenn et al. 1980; Black 1983). While adoption-agency social workers have multiple skills to deal with the social complexities of child placement, many lack the basic genetic knowledge necessary for obtaining informative and accurate genetic histories. They also lack understanding of the potential Received June 2, 1989; revision received September 5, 1989. Address for correspondence: Diane M. Plumridge, M.S.W., Oregon Health Sciences University, Child Development and Rehabilitation Center, P.O. Box 574, Portland, OR 97207. © 1990 by The American Society of Human Genetics. All rights reserved. 0002-9297/90/4601-0027$02.00
208
impact of specific genetic conditions. Knowledge gaps handicap the social workers' efforts to provide all clients with appropriate information which is important to the future health and reproductive planning of the adoptive child. Genetics clinics are receiving an increasing number of requests from those who are involved with the adoption process and who are dependent on adequate family and genetic histories to provide requested services. Requests come from adoption agencies wishing either a genetic evaluation necessary to facilitate appropriate plans for a child or information about a specific genetic condition to better understand the ramifications of the condition in order to provide indicated medical intervention. Sometimes a clinical diagnosis is straightforward or can be made without a family history; however, many questions surround imprecise problems such as mental retardation or mental illness, and both adop-
Heredity and Adoption: A Survey
209
tion agencies and genetic clinics struggle with frustration when faced with questions that have inadequate data available to assist with answers. Adult adoptees often request clinical genetics services as they seek genetic information about their heritage, for reproductive planning and identification of potential health risks. There is a need for a consistent system which allows lines of communication between biologic and adoptive family members without violating confidentiality. This is necessary for parents who, having previously placed a child for adoption, wish newly acquired significant genetic information to be shared with both the child who was adopted and his/her family (e.g., a recent diagnosis of Huntington disease in a biologic parent) or when it is significant for the biologic family to have information about the child (e.g., a diagnosis of fragile X syndrome). On the basis of this growing awareness of the need for an appropriate genetic history, the Social Issues Committee of the ASHG undertook a project to examine three relevant questions:
systematically collected, common set of genetic information be part of a child's adoption record and be shared with the adoptive family- and with adoptee when he or she becomes an adult? 2. Should states mandate obtaining such information before termination of parental rights? 3. Should genetic education programs appropriate for the staff of adoption agencies be developed and implemented? 1. Should
a
Survey During 1987, a letter was written to the legislative counsel of each of the 50 states and Washington DC, asking for information on the current legal requirements for collecting genetic information. All responded. Table 1, for summary, shows each state's legal requirement for collecting genetic information. Wisconsin was the only state in which the wording is quite precise that the court is legally required to furnish, among other information, "the medical and genetic history of the
Table I States' Legal Requirements for Collecting Genetics Information on Children Being Placed for Adoption, as Reported by 1987 Survey
Statute: Genetic
Statute: Genetic
Information Mandated
Information Requested
WI
AZ CA HIb IDb IA KS LA ME MN NJ NY OH OR SC TX
a
b
Statute: Medical History Requested
Protocol: Requires Genetic Informationa
Protocol: Requires Medical Historya
AK AR CO CT FL IL IN MD MA MI MO NE NC ND OK PA SD TN VT WA WV
CA KS
AK AR CO CT FL IN NC ND OK PA TN
NJ NY OH OR TX WI
No
Medical Information Indicated AL DE DC GA KY MS MT NV NH NM RI UT VA WY
Internal requirements for these states were inconsistent, and this list may be incomplete. Legislation passed in 1988, requesting that genetic information be obtained when available.
Plumridge
210
birth parents and any medical and genetic information furnished by the birth parents about the child's grandparents, aunts, uncles, brothers, and sisters:' Thirteen states reported laws requesting that "genetic or hereditary" information be obtained "if possible." The specifics varied. Twenty-one states required that a "medical/social" history be obtained. Sixteen states reported they required that no genetic or medical information be obtained. In 1988, Idaho and Hawaii reported their legislatures were passing legislation requesting that genetic information be obtained on children being released for adoption. Many states reported policies and procedures, rules and regulations, and/or administrative rules, mandating the collection of genetic data prior to adoptive placement. The requirements from the mandates were inconsistent, and the actual information requested varied widely from state to state. A request of the public adoption agencies for a copy of the medical history forms used to obtain -medical information on children obtained 33 responses from 51 requests. Of these 33 returned forms, 19 contained
et
al. (education section)
model legislation to mandate the collection of such information, and (6) having adoption social workers receive training in genetics. The total responses are shown in tables 2-4 and are summarized in the text. The second component was a checklist of birth defects/health problems (those listed were both hereditary and nonTable 2 Development of a Uniform Data Base
A. Perceived Need and Priority Level for Obtaining an Accurate Genetic History SCORED RESPONSES
"DON'T No Low Medium High KNOW" ANSWER TOTAL
1. What is the incidence of identified genetic problems found in children being placed for adoption by your agency? 6 1 32 8 9 15 No ..... 28 25 47 % 2. How frequently are these problems significant enough to complicate the adoption process? 8 1 33 12 5 No ..... 13 24 40 36 % ........
a
similar
set
of questions
pertaining
to
genetic history,
but they were not always adequate to ensure collection of all pertinent genetic information. Some asked general family history questions such as parental size and coloring or education and occupation, and others requested cultural and social information about interests and hobbies. During 1988, an Adoption History Needs Questionnaire was prepared and distributed to the same 51 public agencies contacted in 1987, to solicit opinions about each agency's perceived need and priority level for obtaining an accurate genetic history on each child placed for adoption. There were 39 responses. This survey also sought agencies' opinions on such topics as the existing problems in collecting an optimum genetic history, mandating legislation, and developing interest in education programs for adoption workers. Although most states have many private licensed adoption agencies and/or private placements through independent parties (e.g., attorneys and physicians), only the one state public agency was surveyed, to allow for consistency and a manageable number of responses. The questionnaire had three components. The first consisted of 25 questions covering six areas of inquiry: (1) perceived need for obtaining an accurate genetic history, (2) priority level in obtaining an accurate genetic history, (3) interest in developing a uniform set of genetic information, (4) perceived impediments in collecting an accurate genetic history, (5) interest in developing
3. What is the frequency of adoptive parents requesting a genetic history on a child after placement in their home? 4 4 1 34 12 No ..... 18 12 53 35 % ........
4. What is the frequency of an adult child requesting information about his/her genetic background? 1 1 37 8 16 No ..... 13 22 43 35 % 5. Are these frequencies high enough to warrant the collection of a genetic family history on all children prior to adoptive placement? 2 1 4 4 28 36 No ..... 11 11 78 % 6. What is your agency's priority level in assuring an accurate genetic history is obtained on each child placed for adoption?
No %
.....
........
6 16
7 19
24 65
37
1
1
B. Perceived Need for and Interest in Developing a Uniform Set of Genetic and Family-History Information SCORED RESPONSES
__DON'T No Little Intermediate Great KNOW" ANSWER TOTAL 1. Perceived need for developing an interagency minimum genetic information set for all children being placed for adoption 3 22 0 36 5 No ..... 9 61 25 % ...... 14
2. Interest level in undertaking developing a uniform set of genetic
information No ..... % ......
3 9
11 31
21 60
3
1
35
Table 3 Problems in Obtaining Genetic Information and Interest in Developing Model Legislation
A. Impediments and Limitations to Collecting an Accurate Genetic History SCORED RESPONSES
Not Serious
Intermediate
1. Lack of time to interview birth parents For children under 1 year of age: No 18 % 46 For children over 1 year of age: No 14 % 36 ....
........
........
Serious
"DON'T
No
KNOW"
ANSWER
TOTAL
and extended family members 14 36
7 18
0
0
39
12 31
13 33
0
0
39
2. Extra cost involved in expanded interview time and in researching medical records For children under 1 year of age: No 20 13 6 0 0 51 % 33 15 For children over 1 year of age: No. .... 20 9 10 0 0 51 % 23 26 ....
39
........
39
........
3. Limited access to family history records (lost records, uncooperative families, etc.) For children under 1 year of age: No 4 7 28 0 0 10 % 18 72 For children over 1 year of age: No 4 6 27 2 0 11 16 % 73 ....
39
........
....
37
........
4. Concerns about legal issues of disclosure and confidentiality (incest, AIDS, etc.) For children under 1 year of age: No. .... 17 15 6 1 0 45 39 16 % For children over 1 year of age: 18 1 No. ..... 13 5 0 47 34 18 %
38
........
38
........
B. Perceived Need for and Interest in Developing Model Legislation
Little
SCORED RESPONSES
Intermediate
Great
NO ~~~~~~~~DON'T ANSWER KNOW"
TOTAL
1. State's current legislative priority level in assuring an accurate genetic history is obtained on each child placed for adoption? 14 7 12 1 No. ...... 5 33 42 21 % 36 ........
2. Perceived need for having state legislation which mandates the collection of genetic information on all children being placed for adoption? 12 7 17 3 0 36 No. ...... 33 19 47 % ........
3. Interest level in developing model legislation mandating the collection of genetic information on all children being placed for adoptions? 5 14 0 34 5 No. ...... 15 %
........
44
15
41
Plumridge et al. (education section)
212
Table 4 Interest in Educational Activities
A. Staff Limitations in Collecting Genetic Information SCORED RESPONSES
Little
Intermediate
Great
"DON'T
No
KNOW"
ANSWER
TOTAL
0
39
0
39
0
0
39
0
0
39
1. Lack of staff trained in what genetic information should be obtained For children under 1 year: 4 22 0 No. ... 13 33 56 10 % .... For children over 1 year: 19 2 0 No. ... 18 46 49 5 % .... 2. Lack of staff trained in how to obtain genetic information For children under 1 year: 22 14 3 No. ... 56 8 36 % .... For children over 1 year: 22 14 No. ... 3 8 36 56 % ....
B. Perceived Need for and Interest in Receiving Training in Genetics SCORED RESPONSES
Little
Intermediate
Great
"DON'T
No
KNOW"
ANSWER
TOTAL
1. Perceived need for having adoption personnel receive special training obtaining a genetic family history? 24 0 39 0 No 8 7 62 21 18
2. Interest level in training adoption workers to collect appropriate genetic information? 25 2 1 6 No 5..... 69 14 17
hereditary) that the agency most frequently encountered and would like to know more about. The third component gave an opportunity for comments. (The second component is not discussed here, but the totaled checklist is available on request. The third component is incorporated into the results, as appropriate.) 1. Should a systematically collected, common set of genetic information be part of a child's adoption record and be shared with the adoptive family- and with the adoptee when he or she becomes adult? Table 2 addresses developing a uniform data base. This table shows that, in the opinion of the respondents (i.e., not on the basis of statistical data), the incidence of children seen in adoption agencies who have identified genetic problems is significant. It was noted that adoptive parents infrequently request information on their children. Comments from North Dakota, South
36
Carolina, and Wisconsin indicate that this is because the agencies supply information at the time of placement. This may be true of other states also. However, a high percentage of adult adoptees ask about themselves. Comments from Missouri and Wisconsin indicate that this is usually at an adult developmental stage, such as marriage or pregnancy, or at a time of crisis, such as a miscarriage or illness. Agency response is significant in stating that frequencies of requests are high enough to warrant a collection and sharing of such information. Even in the absence of an identified genetic problem at the time of adoption, a genetic family history can prove to be extremely important in future health concerns and in reproductive planning for any child who has been separated from his or her biological family. On the basis of these tables, it appears that a systematically collected, com-
Heredity and Adoption: A Survey mon set of genetic information should be a part of a child's adoption record to be shared with the child and family. 2. Should states mandate obtaining such information before termination of parental rights? Table 3 addresses the problems observed in obtaining genetic information and expresses opinions regarding mandating legislation to collect such information. Most agencies do not feel undue impediments in collecting genetic information. Neither lack of time nor added cost was rated as a serious obstacle. Inadequate records and the concern of disclosure were both mentioned. Missouri, New Hampshire, and Wisconsin all commented on (1) the difficulty of obtaining an adequate family history when termination is the result of a crisis situation and information is garbled or incomplete, when termination is involuntary and information may be purposely withheld, or when adoption comes after long-term foster care and information is no longer available and (2) the need for a mechanism to protect confidentiality. On the basis of these responses it appears these problems are not insurmountable. Wisconsin has had experience in obtaining a genetic history within a legal framework. Appropriate statutes which clearly mandate (not merely request) both the collection of appropriate information early in entry into the foster-care/ child-welfare system and a mechanism to protect the confidentiality of all parties can be built into any program a state devises. The questions regarding legislating the collection of genetic information on a child before termination of parental rights must be examined more critically. Five states reported not knowing what their legislatures' priorities are in passing statutes to mandate the collection of genetic histories. Some agencies clearly state they feel their legislation is sufficient. Others feel their existing agency requirements -their rules and regulations, policies and procedures, or administrative rules, along with the authority of each - are sufficient. Although 57% of the agencies show, with adequate support services, a medium to high interest level in developing model legislation, the lack of an enthusiastic endorsement of the notion of mandatory legislation may also reflect a reluctance to legislate a process which might better be expanded through education about the importance of this issue. 3. Should genetic education programs appropriate for the staff of adoption agencies be developed and implemented? Table 4 highlights the interest in increased educational
'
213
activities. This table shows that the development and implementation of genetic education programs is a high priority. Agency personnel overwhelmingly identify and support the need to receive education in genetics. Almost two-thirds of all respondents indicate a great need for this, and 80% indicate an intermediate to great need. Almost 70% of respondents are greatly interested in the subject, and over 85% show an intermediate to great interest. Follow-up queries to the questionnaire have requested current information on the status of such a project.
What information to collect is within the purview of genetic education and can be taught. How to collect it is a refinement of already existing social work skills and can be enhanced through specialized training. "What" and "how" education contains the elements of (1) how to set up an initial collection system of family history at a child's first entry into the legal system (whether the entry is voluntary or involuntary, and regardless of age); (2) "what" and "how" to research old medical/legal/family records to identify meaningful material; and (3) "what" to ask and "how" to ask the right questions of family members to obtain the desired information. Genetic education for adoption workers in general is becoming increasingly important (Burns 1984). There are a few existing social work education programs in place upon which other programs can be based. Wisconsin developed a 11/2-d program addressing topics related to the implementation of the Adoption Records Laws in Wisconsin and to some of the legal and ethical implications of the law. The proceedings, "Genetic Family History: An Aid to Better Health in Adoptive Children' was distributed in 1984. "Genetic Applications: A Health Perspective' from the University of Colorado Health Sciences Center, is designed for public health nurses, but the content has been found appropriate for other health professionals. This program has been successfully implemented in several sections of the United States. "Incorporation of Genetics into Clinical Practice: A Manual for a Continuing Education Course for Practicing Nurses, Social Workers and Allied Health Professionals" from Georgetown University, is a continuing and successful one-semester course, and it has recently been redesigned to be presented as a national model. This expanded program is being funded through the March of Dimes-Birth Defects Foundation. The Council on Social Work Education also has developed a curriculum content in genetics for social work graduate school education. In August 1989, The National Academy of Sciences
214
Q
Institute of Medicine conducted a 1-d task force to consider the scope, direction, and structure of a possible study of the provision of health and medical information in the context of adoption. Invited participants were from the Child Welfare League of America, the Academy of Pediatrics, and representatives in the fields of medicine, law, ethics, and education. On the basis of this workshop it was agreed this was a topic which should be further explored. Recommendations
It is apparent the time is right to look critically at the issues of collection, legislation, and education as they pertain to assuring that every child placed for adoption is accompanied by an accurate and thorough a family genetic history as possible. The National Academy of Sciences Institute of Medicine should be encouraged to further explore the whole subject of health and medical information in the context of adoption. As an immediate step it is suggested that a small committee composed of representatives of the American Academy of Pediatrics, ASHG, selected adoption agencies, and the National Society of Genetic Counselors develop a relevant and straightforward medical history form which would become and remain part of the child's permanent record on the child's entry into the foster-care/adoption system. A component of the form would include a clear and accurate section on the genetic history. It is also recommended that education programs that include components of both content and process be developed by representatives from the current programs
Plumridge et al. (education section) and from the Education Committee of the Council of Regional Networks for Genetic Services. The 10 regions which encompass the network may wish to consider implementing these education programs within their regions.
There are no specific recommendations regarding advocating changes in legislation. This is a subject which may require more study.
Acknowledgments The authors wish to thank Dr. Peter Rowley, chairman of the Social Issues Committee, for his encouragement in this project and for editing the manuscript; Dr. Philip Reilly for his helpful comments; all 50 states' and Washington DC's public adoption agencies for their cooperation in returning requested information and for exhibiting continued interest in the outcome of these surveys; and the Pacific Northwest Regional Genetics Group for its allocation of time and materials.
References Black RB (1983) Genetics and adoption: a challenge for social work. In: Dinerman M (ed) Social work in a turbulent world. National Association of Social Work, Inc., Silver Spring, MD, pp 193-208 Burns J (ed) (1984) Genetic family history: an aid to better health in adoptive children. Wisconsin Clinical Genetics Center and Waisman Center on Mental Retardation and Human Development, Madison Omenn GS, Hall JG, Hansen KD (1980) Genetic counseling for adoptees at risk for specific inherited disorders. Am J Med Genet 5:157-164
ASHG ACTIVITIES RELATIVE TO EDUCATION Heredity and Adoption: A Survey of State Adoption Agencies Diane Plumridge,* Joan Burns,T and Nancy L. Fishert
_G HUIVIAN
Pacific Northwest Regional Genetics Group, Child Development and Rehabilitation Center, Oregon Health Sciences University, Portland; TWaisman Center, University of Wisconsin-Madison; and tVirginia Mason Clinic, Seattle
*EDUCATION
Summary A subcommittee of The Social Issues Committee of The American Society of Human Genetics (ASHG), aware of the growing interest in the implications of inheritance and adoption, in 1987 began surveying the 50 states' and Washington DC's public adoption agencies regarding this issue, and it completed the survey in 1988. In 1987, two surveys obtained data on each state's legal requirements for obtaining genetic information and on what each public adoption agency collected as genetic history. These results were presented in a poster at the 1987 ASHG annual meeting in San Diego. In 1968, a questionnaire was sent to the same agencies to elicit opinions as to whether adoption agencies should systematically collect genetic information to share with the adoptive family and adoptee, whether legislation should be mandated to collect such information, and whether genetic education programs should be developed and implemented for adoption-agency staff. On the basis of responses to the 1988 questionnaire, it was concluded that there is an interest in developing a uniform set of genetic information which should be part of a child's adoption record and that there is a need for genetic education programs for adoption workers. Responses to the desirability of mandating legislation for this purpose were less consistent.
Introduction One of every seven couples is infertile and may consider adoption as one alternative to natural parenthood. In recent years, adoption agencies have become increasingly sensitive to the importance of a known genetic history for the adoptee, the adoptive parents, and the biological parents (Omenn et al. 1980; Black 1983). While adoption-agency social workers have multiple skills to deal with the social complexities of child placement, many lack the basic genetic knowledge necessary for obtaining informative and accurate genetic histories. They also lack understanding of the potential Received June 2, 1989; revision received September 5, 1989. Address for correspondence: Diane M. Plumridge, M.S.W., Oregon Health Sciences University, Child Development and Rehabilitation Center, P.O. Box 574, Portland, OR 97207. © 1990 by The American Society of Human Genetics. All rights reserved. 0002-9297/90/4601-0027$02.00
208
impact of specific genetic conditions. Knowledge gaps handicap the social workers' efforts to provide all clients with appropriate information which is important to the future health and reproductive planning of the adoptive child. Genetics clinics are receiving an increasing number of requests from those who are involved with the adoption process and who are dependent on adequate family and genetic histories to provide requested services. Requests come from adoption agencies wishing either a genetic evaluation necessary to facilitate appropriate plans for a child or information about a specific genetic condition to better understand the ramifications of the condition in order to provide indicated medical intervention. Sometimes a clinical diagnosis is straightforward or can be made without a family history; however, many questions surround imprecise problems such as mental retardation or mental illness, and both adop-
Heredity and Adoption: A Survey
209
tion agencies and genetic clinics struggle with frustration when faced with questions that have inadequate data available to assist with answers. Adult adoptees often request clinical genetics services as they seek genetic information about their heritage, for reproductive planning and identification of potential health risks. There is a need for a consistent system which allows lines of communication between biologic and adoptive family members without violating confidentiality. This is necessary for parents who, having previously placed a child for adoption, wish newly acquired significant genetic information to be shared with both the child who was adopted and his/her family (e.g., a recent diagnosis of Huntington disease in a biologic parent) or when it is significant for the biologic family to have information about the child (e.g., a diagnosis of fragile X syndrome). On the basis of this growing awareness of the need for an appropriate genetic history, the Social Issues Committee of the ASHG undertook a project to examine three relevant questions:
systematically collected, common set of genetic information be part of a child's adoption record and be shared with the adoptive family- and with adoptee when he or she becomes an adult? 2. Should states mandate obtaining such information before termination of parental rights? 3. Should genetic education programs appropriate for the staff of adoption agencies be developed and implemented? 1. Should
a
Survey During 1987, a letter was written to the legislative counsel of each of the 50 states and Washington DC, asking for information on the current legal requirements for collecting genetic information. All responded. Table 1, for summary, shows each state's legal requirement for collecting genetic information. Wisconsin was the only state in which the wording is quite precise that the court is legally required to furnish, among other information, "the medical and genetic history of the
Table I States' Legal Requirements for Collecting Genetics Information on Children Being Placed for Adoption, as Reported by 1987 Survey
Statute: Genetic
Statute: Genetic
Information Mandated
Information Requested
WI
AZ CA HIb IDb IA KS LA ME MN NJ NY OH OR SC TX
a
b
Statute: Medical History Requested
Protocol: Requires Genetic Informationa
Protocol: Requires Medical Historya
AK AR CO CT FL IL IN MD MA MI MO NE NC ND OK PA SD TN VT WA WV
CA KS
AK AR CO CT FL IN NC ND OK PA TN
NJ NY OH OR TX WI
No
Medical Information Indicated AL DE DC GA KY MS MT NV NH NM RI UT VA WY
Internal requirements for these states were inconsistent, and this list may be incomplete. Legislation passed in 1988, requesting that genetic information be obtained when available.
Plumridge
210
birth parents and any medical and genetic information furnished by the birth parents about the child's grandparents, aunts, uncles, brothers, and sisters:' Thirteen states reported laws requesting that "genetic or hereditary" information be obtained "if possible." The specifics varied. Twenty-one states required that a "medical/social" history be obtained. Sixteen states reported they required that no genetic or medical information be obtained. In 1988, Idaho and Hawaii reported their legislatures were passing legislation requesting that genetic information be obtained on children being released for adoption. Many states reported policies and procedures, rules and regulations, and/or administrative rules, mandating the collection of genetic data prior to adoptive placement. The requirements from the mandates were inconsistent, and the actual information requested varied widely from state to state. A request of the public adoption agencies for a copy of the medical history forms used to obtain -medical information on children obtained 33 responses from 51 requests. Of these 33 returned forms, 19 contained
et
al. (education section)
model legislation to mandate the collection of such information, and (6) having adoption social workers receive training in genetics. The total responses are shown in tables 2-4 and are summarized in the text. The second component was a checklist of birth defects/health problems (those listed were both hereditary and nonTable 2 Development of a Uniform Data Base
A. Perceived Need and Priority Level for Obtaining an Accurate Genetic History SCORED RESPONSES
"DON'T No Low Medium High KNOW" ANSWER TOTAL
1. What is the incidence of identified genetic problems found in children being placed for adoption by your agency? 6 1 32 8 9 15 No ..... 28 25 47 % 2. How frequently are these problems significant enough to complicate the adoption process? 8 1 33 12 5 No ..... 13 24 40 36 % ........
a
similar
set
of questions
pertaining
to
genetic history,
but they were not always adequate to ensure collection of all pertinent genetic information. Some asked general family history questions such as parental size and coloring or education and occupation, and others requested cultural and social information about interests and hobbies. During 1988, an Adoption History Needs Questionnaire was prepared and distributed to the same 51 public agencies contacted in 1987, to solicit opinions about each agency's perceived need and priority level for obtaining an accurate genetic history on each child placed for adoption. There were 39 responses. This survey also sought agencies' opinions on such topics as the existing problems in collecting an optimum genetic history, mandating legislation, and developing interest in education programs for adoption workers. Although most states have many private licensed adoption agencies and/or private placements through independent parties (e.g., attorneys and physicians), only the one state public agency was surveyed, to allow for consistency and a manageable number of responses. The questionnaire had three components. The first consisted of 25 questions covering six areas of inquiry: (1) perceived need for obtaining an accurate genetic history, (2) priority level in obtaining an accurate genetic history, (3) interest in developing a uniform set of genetic information, (4) perceived impediments in collecting an accurate genetic history, (5) interest in developing
3. What is the frequency of adoptive parents requesting a genetic history on a child after placement in their home? 4 4 1 34 12 No ..... 18 12 53 35 % ........
4. What is the frequency of an adult child requesting information about his/her genetic background? 1 1 37 8 16 No ..... 13 22 43 35 % 5. Are these frequencies high enough to warrant the collection of a genetic family history on all children prior to adoptive placement? 2 1 4 4 28 36 No ..... 11 11 78 % 6. What is your agency's priority level in assuring an accurate genetic history is obtained on each child placed for adoption?
No %
.....
........
6 16
7 19
24 65
37
1
1
B. Perceived Need for and Interest in Developing a Uniform Set of Genetic and Family-History Information SCORED RESPONSES
__DON'T No Little Intermediate Great KNOW" ANSWER TOTAL 1. Perceived need for developing an interagency minimum genetic information set for all children being placed for adoption 3 22 0 36 5 No ..... 9 61 25 % ...... 14
2. Interest level in undertaking developing a uniform set of genetic
information No ..... % ......
3 9
11 31
21 60
3
1
35
Table 3 Problems in Obtaining Genetic Information and Interest in Developing Model Legislation
A. Impediments and Limitations to Collecting an Accurate Genetic History SCORED RESPONSES
Not Serious
Intermediate
1. Lack of time to interview birth parents For children under 1 year of age: No 18 % 46 For children over 1 year of age: No 14 % 36 ....
........
........
Serious
"DON'T
No
KNOW"
ANSWER
TOTAL
and extended family members 14 36
7 18
0
0
39
12 31
13 33
0
0
39
2. Extra cost involved in expanded interview time and in researching medical records For children under 1 year of age: No 20 13 6 0 0 51 % 33 15 For children over 1 year of age: No. .... 20 9 10 0 0 51 % 23 26 ....
39
........
39
........
3. Limited access to family history records (lost records, uncooperative families, etc.) For children under 1 year of age: No 4 7 28 0 0 10 % 18 72 For children over 1 year of age: No 4 6 27 2 0 11 16 % 73 ....
39
........
....
37
........
4. Concerns about legal issues of disclosure and confidentiality (incest, AIDS, etc.) For children under 1 year of age: No. .... 17 15 6 1 0 45 39 16 % For children over 1 year of age: 18 1 No. ..... 13 5 0 47 34 18 %
38
........
38
........
B. Perceived Need for and Interest in Developing Model Legislation
Little
SCORED RESPONSES
Intermediate
Great
NO ~~~~~~~~DON'T ANSWER KNOW"
TOTAL
1. State's current legislative priority level in assuring an accurate genetic history is obtained on each child placed for adoption? 14 7 12 1 No. ...... 5 33 42 21 % 36 ........
2. Perceived need for having state legislation which mandates the collection of genetic information on all children being placed for adoption? 12 7 17 3 0 36 No. ...... 33 19 47 % ........
3. Interest level in developing model legislation mandating the collection of genetic information on all children being placed for adoptions? 5 14 0 34 5 No. ...... 15 %
........
44
15
41
Plumridge et al. (education section)
212
Table 4 Interest in Educational Activities
A. Staff Limitations in Collecting Genetic Information SCORED RESPONSES
Little
Intermediate
Great
"DON'T
No
KNOW"
ANSWER
TOTAL
0
39
0
39
0
0
39
0
0
39
1. Lack of staff trained in what genetic information should be obtained For children under 1 year: 4 22 0 No. ... 13 33 56 10 % .... For children over 1 year: 19 2 0 No. ... 18 46 49 5 % .... 2. Lack of staff trained in how to obtain genetic information For children under 1 year: 22 14 3 No. ... 56 8 36 % .... For children over 1 year: 22 14 No. ... 3 8 36 56 % ....
B. Perceived Need for and Interest in Receiving Training in Genetics SCORED RESPONSES
Little
Intermediate
Great
"DON'T
No
KNOW"
ANSWER
TOTAL
1. Perceived need for having adoption personnel receive special training obtaining a genetic family history? 24 0 39 0 No 8 7 62 21 18
2. Interest level in training adoption workers to collect appropriate genetic information? 25 2 1 6 No 5..... 69 14 17
hereditary) that the agency most frequently encountered and would like to know more about. The third component gave an opportunity for comments. (The second component is not discussed here, but the totaled checklist is available on request. The third component is incorporated into the results, as appropriate.) 1. Should a systematically collected, common set of genetic information be part of a child's adoption record and be shared with the adoptive family- and with the adoptee when he or she becomes adult? Table 2 addresses developing a uniform data base. This table shows that, in the opinion of the respondents (i.e., not on the basis of statistical data), the incidence of children seen in adoption agencies who have identified genetic problems is significant. It was noted that adoptive parents infrequently request information on their children. Comments from North Dakota, South
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Carolina, and Wisconsin indicate that this is because the agencies supply information at the time of placement. This may be true of other states also. However, a high percentage of adult adoptees ask about themselves. Comments from Missouri and Wisconsin indicate that this is usually at an adult developmental stage, such as marriage or pregnancy, or at a time of crisis, such as a miscarriage or illness. Agency response is significant in stating that frequencies of requests are high enough to warrant a collection and sharing of such information. Even in the absence of an identified genetic problem at the time of adoption, a genetic family history can prove to be extremely important in future health concerns and in reproductive planning for any child who has been separated from his or her biological family. On the basis of these tables, it appears that a systematically collected, com-
Heredity and Adoption: A Survey mon set of genetic information should be a part of a child's adoption record to be shared with the child and family. 2. Should states mandate obtaining such information before termination of parental rights? Table 3 addresses the problems observed in obtaining genetic information and expresses opinions regarding mandating legislation to collect such information. Most agencies do not feel undue impediments in collecting genetic information. Neither lack of time nor added cost was rated as a serious obstacle. Inadequate records and the concern of disclosure were both mentioned. Missouri, New Hampshire, and Wisconsin all commented on (1) the difficulty of obtaining an adequate family history when termination is the result of a crisis situation and information is garbled or incomplete, when termination is involuntary and information may be purposely withheld, or when adoption comes after long-term foster care and information is no longer available and (2) the need for a mechanism to protect confidentiality. On the basis of these responses it appears these problems are not insurmountable. Wisconsin has had experience in obtaining a genetic history within a legal framework. Appropriate statutes which clearly mandate (not merely request) both the collection of appropriate information early in entry into the foster-care/ child-welfare system and a mechanism to protect the confidentiality of all parties can be built into any program a state devises. The questions regarding legislating the collection of genetic information on a child before termination of parental rights must be examined more critically. Five states reported not knowing what their legislatures' priorities are in passing statutes to mandate the collection of genetic histories. Some agencies clearly state they feel their legislation is sufficient. Others feel their existing agency requirements -their rules and regulations, policies and procedures, or administrative rules, along with the authority of each - are sufficient. Although 57% of the agencies show, with adequate support services, a medium to high interest level in developing model legislation, the lack of an enthusiastic endorsement of the notion of mandatory legislation may also reflect a reluctance to legislate a process which might better be expanded through education about the importance of this issue. 3. Should genetic education programs appropriate for the staff of adoption agencies be developed and implemented? Table 4 highlights the interest in increased educational
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activities. This table shows that the development and implementation of genetic education programs is a high priority. Agency personnel overwhelmingly identify and support the need to receive education in genetics. Almost two-thirds of all respondents indicate a great need for this, and 80% indicate an intermediate to great need. Almost 70% of respondents are greatly interested in the subject, and over 85% show an intermediate to great interest. Follow-up queries to the questionnaire have requested current information on the status of such a project.
What information to collect is within the purview of genetic education and can be taught. How to collect it is a refinement of already existing social work skills and can be enhanced through specialized training. "What" and "how" education contains the elements of (1) how to set up an initial collection system of family history at a child's first entry into the legal system (whether the entry is voluntary or involuntary, and regardless of age); (2) "what" and "how" to research old medical/legal/family records to identify meaningful material; and (3) "what" to ask and "how" to ask the right questions of family members to obtain the desired information. Genetic education for adoption workers in general is becoming increasingly important (Burns 1984). There are a few existing social work education programs in place upon which other programs can be based. Wisconsin developed a 11/2-d program addressing topics related to the implementation of the Adoption Records Laws in Wisconsin and to some of the legal and ethical implications of the law. The proceedings, "Genetic Family History: An Aid to Better Health in Adoptive Children' was distributed in 1984. "Genetic Applications: A Health Perspective' from the University of Colorado Health Sciences Center, is designed for public health nurses, but the content has been found appropriate for other health professionals. This program has been successfully implemented in several sections of the United States. "Incorporation of Genetics into Clinical Practice: A Manual for a Continuing Education Course for Practicing Nurses, Social Workers and Allied Health Professionals" from Georgetown University, is a continuing and successful one-semester course, and it has recently been redesigned to be presented as a national model. This expanded program is being funded through the March of Dimes-Birth Defects Foundation. The Council on Social Work Education also has developed a curriculum content in genetics for social work graduate school education. In August 1989, The National Academy of Sciences
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Institute of Medicine conducted a 1-d task force to consider the scope, direction, and structure of a possible study of the provision of health and medical information in the context of adoption. Invited participants were from the Child Welfare League of America, the Academy of Pediatrics, and representatives in the fields of medicine, law, ethics, and education. On the basis of this workshop it was agreed this was a topic which should be further explored. Recommendations
It is apparent the time is right to look critically at the issues of collection, legislation, and education as they pertain to assuring that every child placed for adoption is accompanied by an accurate and thorough a family genetic history as possible. The National Academy of Sciences Institute of Medicine should be encouraged to further explore the whole subject of health and medical information in the context of adoption. As an immediate step it is suggested that a small committee composed of representatives of the American Academy of Pediatrics, ASHG, selected adoption agencies, and the National Society of Genetic Counselors develop a relevant and straightforward medical history form which would become and remain part of the child's permanent record on the child's entry into the foster-care/adoption system. A component of the form would include a clear and accurate section on the genetic history. It is also recommended that education programs that include components of both content and process be developed by representatives from the current programs
Plumridge et al. (education section) and from the Education Committee of the Council of Regional Networks for Genetic Services. The 10 regions which encompass the network may wish to consider implementing these education programs within their regions.
There are no specific recommendations regarding advocating changes in legislation. This is a subject which may require more study.
Acknowledgments The authors wish to thank Dr. Peter Rowley, chairman of the Social Issues Committee, for his encouragement in this project and for editing the manuscript; Dr. Philip Reilly for his helpful comments; all 50 states' and Washington DC's public adoption agencies for their cooperation in returning requested information and for exhibiting continued interest in the outcome of these surveys; and the Pacific Northwest Regional Genetics Group for its allocation of time and materials.
References Black RB (1983) Genetics and adoption: a challenge for social work. In: Dinerman M (ed) Social work in a turbulent world. National Association of Social Work, Inc., Silver Spring, MD, pp 193-208 Burns J (ed) (1984) Genetic family history: an aid to better health in adoptive children. Wisconsin Clinical Genetics Center and Waisman Center on Mental Retardation and Human Development, Madison Omenn GS, Hall JG, Hansen KD (1980) Genetic counseling for adoptees at risk for specific inherited disorders. Am J Med Genet 5:157-164
