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| Only about half of the states |
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Definition
| offer protections against surreptitious commercial genetic testing |
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| Basic ethical principles for assessing whole genome sequencing |
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Definition
| flow from the ideal of respect for persons--public beneficence, responsible stewardship, intellectual freedom and responsibility, democratic deliberation, and justice and fairness |
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| requires strong baseline protections for privacy and security of data; also requires any collection and sharing of individual data be based on a robust process of informed consent |
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Definition
| principle of respect for persons |
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| requires facilitating ample opportunities for data sharing and access to data by clinicians, researchers, and other authorized users |
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| calls for oversight and management of whole genome sequence information by funders, managers, professional organizations, and others |
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| urges all parties to consider changes to policies and practices in light of the evolving science and its implications for enduring ethical values |
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| requires that we seek to channel the benefits of the whole genome sequencing to all who can potentially benefit, and to ensure that the risks are not disproportionately borne by any subset of the population, including vulnerable or marginalized groups |
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| require a spectrum of policies starting with data handling through the protection of persons from future disadvantage and discrimination arising from misuse of their whole genome sequence data |
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Definition
| strong baseline privacy protections |
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Term
| must include information about what whole genome sequencing is; how data will be analyzed, stored, and shared; the types of results the patient and participant can expect to receive, if relevant; and the likelihood that the implications of some of these results might currently be unknown but could be discovered in the future |
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| should establish clear and consistent guidelines for informed consent forms for research conducted by those under the purview of the Common Rule that involved whole genome sequencing |
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| the federal Office for Human Research Protections or a designated central organizing federal agency |
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