| Description |
39 pages ; 25 cm |
| Contents |
Chapter 1. Introduction -- 1.1. Background to the establishment of genetic registers -- 1.2. Characteristics of a genetic register -- 1.3. Genetic register structure -- 1.4. Genetic registers and links to others involved in the health care of registrants -- ch. 2. Establishment of a genetic register -- 2.1. Requirements for establishing a genetic register -- ch. 3. Recruitment of registrants -- 3.1. Identification of potential registrants -- 3.2. The first contact with the genetic register -- ch. 4. Consent -- 4.1. Obtaining consent from the registrant for inclusion in the register -- 4.2. Obtaining other consents -- 4.2.1. Consents related to the registrant -- 4.2.2. Consents related to others -- 4.3. Consent related to deceased persons -- 4.4. Information which register staff obtain without consent -- ch. 5. Confidentiality -- 5.1. Confidentiality guidelines -- ch. 6. Contacting family members -- 6.1. The value of contacting family members -- 6.2. Setting limits to family contact -- 6.3. Recognition of the role of registrants' health professionals -- ch. 7. Security of a genetic register -- 7.1. Facilities to ensure the security of register information and genetic material -- 7.2. Facilities to ensure integrity of register information and genetic material -- 7.3. Working with and transferring information -- ch. 8. Amalgamation and winding up of genetic registers |
| Summary |
The NHMRC published Guidelines for the Use of Genetic Registers in Medical Research in 1991. Rather than providing guidelines for the gathering, use and release of data related to registers, the Guidelines described the conventions which applied to these aspects of register function, and addressed only one area, namely, the use of register data for research. It has become clear subsequently that there is a need for guidelines to cover all aspects of register operation, including the storage of genetic material. These revised Guidelines, which have increased scope, replace Guidelines for the Use of Genetic Registers in Medical Research, issued in 1991. They should be read in conjunction with the NHMRC National Statement on Ethical Conduct in Research Involving Humans (1999) and the NHMRC publication Ethical Aspects of Human Genetic Testing - An Information Paper (2000) |
| Notes |
Cat. no. 9927468 |
| Bibliography |
Includes bibliographical references (page37) |
| Notes |
Also available on the Internet at: http://www.nhmrc.health.gov.au |
|
Commonwealth of Australia 1999 |
| Subject |
Genetic disorders -- Reporting -- Australia.
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Human chromosome abnormalities -- Reporting -- Australia.
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Medical genetics -- Reporting -- Australia.
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Medical record linkage -- Australia.
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Medical records -- Management -- Australia.
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Medical records.
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Chromosomes, Human.
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Cytogenetics.
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Genetics, Medical.
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Medical Records.
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| Author |
National Health and Medical Research Council (Australia)
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| ISBN |
0642422354 (electronic ISBN) |
|
1864961031 |
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