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12. Access Information

Summary

12.1 The Group considered access to information in relation to adoptions. The Group examined access to medical information, in particular access by adopted children to medical information about their birth parents without their consent. The Group also considered who should have access to adoption records and what information should be provided to adoptive parents about children at placement.

12.2 The Group's major recommendations are:

• only adopted people aged 16 or over should have an automatic right to information about their adoption (12.9)
• adopted people under 16 should have clear though limited rights to have access to appropriate information from their adoption agency records (12.9)
• regulations should lay out a support service for tracing and accessing information as a distinct part of the overall adoption support system (12.10)
• there should be primary legislation to allow the release of medical information, with or without consent, where this is necessary to plan properly for children who cannot live with their birth families (12.17)
• there should be further guidance to agencies to ensure that all relevant information about children is passed on to prospective adopters, in written form as well as orally (12.30)

Access to adoption records

12.3 The Group considered the interests of three groups of people in tracing and/or accessing records:

• adults and children who have been adopted;
• birth parents and other birth relatives of adopted people;
• other relatives of adopted people, such as their spouses, children or adoptive parents, particularly when the adopted person has died or otherwise cannot or will not exercise rights to access information. ¹

12.4 Currently only adopted people who are 16 or over have automatic rights to information about their own adoption. They can obtain a copy of their original birth certificate, which will provide details of their birth parents. ² They can have full sight of the court papers relating to their adoption. ³ They can also ask to see their adoption agency records, although the agency has discretion not to release the papers. ⁴ Adopted people under 16 have no automatic rights to information about their adoption, although adoption agencies have discretion to provide them with information, and they have a right to counselling and assistance from the agency. ⁵

12.5 The other groups of people identified above have no right to information about an adoption. However, adoption agencies have a duty to provide a service to birth parents and counselling to others with problems related to adoption. ⁶

12.6 Birth parents, birth families and others can also use the non-statutory adoption contact register run by Birthlink. The contact register allows people affected by adoption, either adopted people or relatives, to register an interest in establishing contact with each other. This is done on a purely voluntary and consensual basis. If the agency running the register matches two approaches it can facilitate contact between the parties, with a high degree of professional counselling and support.

12.7 The Adoption and Children Act 2002 has made new provision for the access to information about adoption in England and Wales. The Act and associated regulations provide a system for birth families and others to apply for information about an adopted person, and to be counselled about tracing adopted relatives. However, the Act only gives a right to information to the adopted person. ⁷

12.8 Consultation responses indicated that there is a lack of knowledge about the rules governing the release of information. A clearer explanation of who is entitled to what information would be welcome. The respondents also called for a consistent system across Scotland, with the same level of service provision.

12.9 The Group recommends that only adopted people aged 16 or over should have an automatic right to information about their adoption. The Group recommends that adopted people under 16 should also have clear though limited rights to access appropriate information from their adoption agency records. The Group does not recommend that other people affected by adoption should have a right to information, but the Group recognised that there was uncertainty about the rights and services available to the three groups of people identified above. The Group advocates a clear and full statement in this regard of the rights of and the services available to those affected by adoption, including who can access particular information and in what circumstances. Such a statement, which would also be valuable to care professionals, should be in guidance rather than primary legislation.

12.10 The Group recommends that there should be a support service for tracing and accessing information as a distinct part of the overall adoption support system. This service should include the provision of intermediary services for birth parents and other birth family members and assistance to other relatives of adopted people, such as their spouses, children or adoptive parents, particularly when the adopted person has died or otherwise cannot exercise rights to information. At present, there is disparity in the information and services provided around Scotland and a system prescribed by regulation would provide greater consistency.

12.11 The Group recommends that voluntary agencies should be allowed to provide those adoption support services that involve tracing and access to records. The work of Birthlink on the adoption contact register has shown the value of involving the voluntary sector in this area.

Access to medical information

12.12 The Group considered various concerns about the current law in relation to information about medical matters. ⁸ These included:

• access to medical information about children, birth parents and birth families.
• the content of medical reports on prospective adopters.
• disclosure of medical information about prospective adopters to birth parents.
• 'registered medical practitioner' to include a registered nurse.

Access to medical information about children and birth parents

12.13 A full health assessment is part of the process of planning permanence for a child. This requires extensive medical information, including indicators of possible future health problems. Medical advisers to local authorities and adoption agencies try to get as much medical information about children and their birth parents as possible. This can be difficult to obtain. A proper assessment of the potential risks to a child's health requires access to the medical history of the pregnancy - the level of ante-natal care, any indications of substance or alcohol abuse, any obstetric complications - as well as the wider family medical history, for example, genetic issues. There is therefore a need for access to medical information about birth parents, as well as information about the child.

12.14 The issues about the release of medical information are complex, but generally, disclosure of medical information requires the consent of the person to whom the information relates, or, for children too young to consent, the consent of a person with parental responsibilities and rights for the child.

12.15 In practice, there are difficulties for local authorities and adoption agencies in obtaining medical information about children and birth parents in three situations:

• there is no consent because birth parents have never been asked;
• there is no consent because birth parents have disappeared or are otherwise absent and therefore cannot be asked;
• there is no consent because birth parents have been asked but have refused to agree.

Information about a child may in some circumstances be disclosed without parental consent if the child's welfare requires it. However, there are greater difficulties in obtaining medical information about the parent without explicit consent.

12.16 The consultation responses indicated that agencies and their medical advisers had difficulties in obtaining medical information about children and their families, which hindered good planning. The respondents would welcome greater sharing of information, but recognised the need to respect parents' rights.

12.17 The Group concluded that the local authority or agency had a right to obtain all relevant information which might affect the development of a child in public care, including a child that is being adopted. The Group recommends that there should be primary legislation to allow the release of medical information, with or without consent, where this is necessary to plan properly for children who cannot live with their birth parents. This would be consistent with the General Medical Council Guidelines on Consent, which allow information to be released without consent when there is a specific statutory requirement.

12.18 In addition to legislation, guidance from the Scottish Executive, professional bodies and others should encourage all professionals to take active steps to share with each other appropriate information to ensure the best long-term outcome for a child requiring a permanent placement. Local authority and agency procedures should make clear that all possible steps should be taken to obtain the necessary consent to disclose information from birth parents, ensuring that birth parents are asked to consent and that the reasons for consent are explained to them.

Access to medical information about birth families

12.19 There can be circumstances where an adult adopted person, or the adopters of a younger adopted person, need access to medical information about the birth family, for example if an inherited condition comes to light some years after the adoption. In most families, this information is available informally and easily accessed, but this is rarely possible after an adoption which tend to sever all social bonds with the birth family. The Group considered whether a system could be developed to gain access to this information after adoption, without unnecessarily compromising the confidentiality of either the adoption or the medical information about the birth family.

12.20 Consultation responses recognised this as an issue and were in principle in favour of a system of sharing such information. The increasing importance of genetic information was highlighted. The Group was in no doubt that this is a very important issue for adopted people, particularly adult adopted people who face difficulties in obtaining medical information about their birth families which might be crucial to their own health.

12.21 A full assessment of the future risks to a child's health is required at the time of adoption, and this may involve access to information to the birth family's medical history. However, there will still be circumstances in which adopters or adult adopted people would benefit from access to medical information about the wider birth family. The Group does not recommend an automatic right of access to information about the wider family. The Group recommends that professionals should consider carefully the need to disclose medical information about wider birth families to adopted people and adopters taking into account all the circumstances.

Content of medical reports on prospective adopters

12.22 Medical reports are an essential part of the assessment process for prospective adopters, and prospective adopters consent to the disclosure of medical information to the local authority or agency. However, there is no clear guidance to general practitioners about how much information to include in their reports on prospective adopters. In practice it appears that on occasion information can be omitted from the written report and then disclosed orally if the doctor is contacted directly by a colleague. Consultation responses indicated that additional guidance on this area of practice would be welcome.

12.23 The Group recommends that there should be clearer interagency guidance for general practitioners and consultants dealing with prospective adopters, possibly requiring doctors to disclose all information to adoption agencies. Consent forms for signing by prospective adopters should provide for this.

Disclosure of medical information about prospective adopters to birth parents

12.24 There is an increasing tendency in disputed proceedings for agents for birth parents to seek production of medical and other information about prospective adopters. Consultation responses indicated unease at this development, and some respondents believed that this information should not be released without the consent of the prospective adopters and certainly not if part of a "fishing" exercise on the part of those acting for the birth family.

12.25 The Group shares these concerns but accepted that the courts must allow access to this information when it is clearly shown to be relevant to the best interests of the child. The Group recommends that those representing birth parents should only make requests to see medical information about adopters where the information can be shown to be relevant.

Meaning of "registered medical practitioner"

12.26 There is an issue about the meaning of the phrase "registered medical practitioner" in current regulations. ⁹ Some local authorities and agencies are reluctant to use nurse practitioners because their understanding is that the phrase only refers to doctors.

12.27 The Group recommends that regulations should make it clear that the term "registered medical practitioner" includes nurse practitioners as well as doctors.

Information provided to adopters at placement

12.28 At present, prospective adopters must be provided with written information about the child with whom they are matched. ¹⁰ Medical information must be passed to the prospective adopters' health board and family doctor. ¹¹ While these provisions and the supporting guidance are wide-ranging, adopters have complained that they have not been given full information about a child, and the child's medical prognosis and future needs. There have been examples of agencies failing to give all the information they had to adopters, so that they were not prepared for foreseeable deterioration in the child's health. Prospective adopters have told us that they would not have accepted the placement if the full facts had been disclosed.

12.29 Consultees were asked if the regulations should be strengthened. Consultation responses indicated that there was strong support for the release of medical information where it was in the best interests of the child. However, there is a need for clearer guidance on this, so that it is clear who has responsibility for the release of such information.

12.30 The Group agreed the existing regulations on disclosure of information to adopters were satisfactory, but recommends there should be further guidance to agencies to ensure that all relevant information about children whether received by them orally as well as in writing should be made known to prospective adopters.

Recommendations of Chapter 12 - access to information

100. Only adopted people aged 16 or over should have an automatic right to information about their adoption. Adopted people under 16 should also have clear though limited rights to access to appropriate information from their adoption agency records. (12.9)

101. There should be a support service for tracing and accessing information as a distinct part of the overall adoption support system. (12.10)

102. Voluntary agencies should be allowed to provide those adoption support services that involve tracing and access to records. (12.11)

103. There should be primary legislation to allow the release of medical information about birth parents, with or without consent, where this is necessary to plan properly for children who cannot live with their birth parents. However, there should not be a right of access to medical information about the wider family. Professionals should consider carefully the need to disclose such medical information to adopted people and adopters. (12.17 and 12.21)

104. There should be clearer interagency guidance for general practitioners and consultants dealing with prospective adopters, possibly requiring doctors to disclose all information to adoption agencies. (12.23)

105. Those representing birth parents should only make requests to see medical information about adopters where the information can be shown to be relevant. (12.25)

106. Regulations should make it clear that the term "registered medical practitioner" includes nurse practitioners as well as doctors. (12.27)

107. Existing regulations on disclosure of information about children to adopters are satisfactory, but there should be further guidance to agencies to ensure that all relevant information about children is passed on to prospective adopters, in written form as well as orally. (12.30)

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