Disclosure of individual genetic data to research participants: the debate reconsidered.
Despite extensive debate, there is no consensus on whether individual genetic data should be disclosed to research participants. The emergence of whole-genome sequencing methods is increasingly generating unequalled amounts of genetic data, making the need for a clear feedback policy even more urgen...
| Main Authors: | , , , , |
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| Format: | Journal article |
| Language: | English |
| Published: |
2011
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| _version_ | 1797087490691039232 |
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| author | Bredenoord, A Kroes, H Cuppen, E Parker, M van Delden, J |
| author_facet | Bredenoord, A Kroes, H Cuppen, E Parker, M van Delden, J |
| author_sort | Bredenoord, A |
| collection | OXFORD |
| description | Despite extensive debate, there is no consensus on whether individual genetic data should be disclosed to research participants. The emergence of whole-genome sequencing methods is increasingly generating unequalled amounts of genetic data, making the need for a clear feedback policy even more urgent. In this debate two positions can be broadly discerned: a restrictive disclosure policy ('no feedback except life-saving data') and an intermediate policy of qualified disclosure ('feedback if the results meet certain conditions'). We explain both positions and present the principal underlying arguments. We suggest that the debate should no longer address whether genetic research results should be returned, but instead how best to make an appropriate selection and how to strike a balance between the possible benefits of disclosure and the harms of unduly hindering biomedical research. |
| first_indexed | 2024-03-07T02:36:24Z |
| format | Journal article |
| id | oxford-uuid:a8eef729-bf9e-46c6-ba2f-5344ac035c3c |
| institution | University of Oxford |
| language | English |
| last_indexed | 2024-03-07T02:36:24Z |
| publishDate | 2011 |
| record_format | dspace |
| spelling | oxford-uuid:a8eef729-bf9e-46c6-ba2f-5344ac035c3c2022-03-27T03:05:01ZDisclosure of individual genetic data to research participants: the debate reconsidered.Journal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:a8eef729-bf9e-46c6-ba2f-5344ac035c3cEnglishSymplectic Elements at Oxford2011Bredenoord, AKroes, HCuppen, EParker, Mvan Delden, JDespite extensive debate, there is no consensus on whether individual genetic data should be disclosed to research participants. The emergence of whole-genome sequencing methods is increasingly generating unequalled amounts of genetic data, making the need for a clear feedback policy even more urgent. In this debate two positions can be broadly discerned: a restrictive disclosure policy ('no feedback except life-saving data') and an intermediate policy of qualified disclosure ('feedback if the results meet certain conditions'). We explain both positions and present the principal underlying arguments. We suggest that the debate should no longer address whether genetic research results should be returned, but instead how best to make an appropriate selection and how to strike a balance between the possible benefits of disclosure and the harms of unduly hindering biomedical research. |
| spellingShingle | Bredenoord, A Kroes, H Cuppen, E Parker, M van Delden, J Disclosure of individual genetic data to research participants: the debate reconsidered. |
| title | Disclosure of individual genetic data to research participants: the debate reconsidered. |
| title_full | Disclosure of individual genetic data to research participants: the debate reconsidered. |
| title_fullStr | Disclosure of individual genetic data to research participants: the debate reconsidered. |
| title_full_unstemmed | Disclosure of individual genetic data to research participants: the debate reconsidered. |
| title_short | Disclosure of individual genetic data to research participants: the debate reconsidered. |
| title_sort | disclosure of individual genetic data to research participants the debate reconsidered |
| work_keys_str_mv | AT bredenoorda disclosureofindividualgeneticdatatoresearchparticipantsthedebatereconsidered AT kroesh disclosureofindividualgeneticdatatoresearchparticipantsthedebatereconsidered AT cuppene disclosureofindividualgeneticdatatoresearchparticipantsthedebatereconsidered AT parkerm disclosureofindividualgeneticdatatoresearchparticipantsthedebatereconsidered AT vandeldenj disclosureofindividualgeneticdatatoresearchparticipantsthedebatereconsidered |