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Genomics and Ethics
Pages 75-80

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From page 75... ... ethical problems arising from the use of genetic interventions to change who will live in the future. GENETICS RESEARCH AND INFORMATION PRIVACY PROTECTION Numerous parties scientists, biotechnology companies, pharmaceutical companies, and patient advocacy groups, for instance have begun to value DNA not only for its biochemical properties but also for the many layers of information it contains. Read the entire page →
From page 76... ... This argument applies to genetic information, because knowledge of your genetic predispositions may affect how people treat you or conceive of you it may affect their attribution of an identity to you. There are numerous ways in which genetic information generated during research can become known to "third parties." For instance, if the research involves genetic testing or sequencing and the reporting back of test results, these results may become part of a subject's medical records and/or school records and, therefore, may become accessible to hundreds of people; if the research involves DNA sequencing and the sequence information is linkable to a subject's identity and not stored securely, it may become accessible; and if the research involves banking of bodily materials and those materials can be both linked to the subject and used for DNA sequencing or testing by other researchers or at a later date, genetic information may become "public." Sequence information raises particularly difficult privacy concerns, because when we obtain sequence data, we do not necessarily understand or recognize all of the information the data contain. Read the entire page →
From page 77... ... Federal human subjects research regulations currently are considered inadequate with respect to protecting genetic privacy, but they are under review by the National Bioethics Advisory Commission, and recommendations for their revision are forthcoming. Many states have genetic information privacy laws; however, because these laws differ from each other in fundamental ways (such as in their definitions of "genetic information") Read the entire page →
From page 78... ... A person with a germ-line modification would have the same reproductive freedom as anybody else, and could choose whether to become a genetic parent, and whether to use assisted reproduction to prevent his or her genetic modification from being transmitted to future generations. What ethical principles or approaches should guide us as individuals or as a society in determining which genetic interventions are permissible/impermissible or obligatory? Read the entire page →
From page 79... ... This is a principle that judges the rightness of a choice by weighing two possible future worlds against each other: If we make the better choice, there will be people who are better off, but the reason that choice was better is not because any particular people have been made better off! If we are to use impersonal principles to guide and evaluate choices about genetic interventions that affect future generations, then there are still many issues to be addressed. Read the entire page →

From page 75...

... ethical problems arising from the use of genetic interventions to change who will live in the future. GENETICS RESEARCH AND INFORMATION PRIVACY PROTECTION Numerous parties scientists, biotechnology companies, pharmaceutical companies, and patient advocacy groups, for instance have begun to value DNA not only for its biochemical properties but also for the many layers of information it contains.

Read the entire page →

From page 76...

... This argument applies to genetic information, because knowledge of your genetic predispositions may affect how people treat you or conceive of you it may affect their attribution of an identity to you. There are numerous ways in which genetic information generated during research can become known to "third parties." For instance, if the research involves genetic testing or sequencing and the reporting back of test results, these results may become part of a subject's medical records and/or school records and, therefore, may become accessible to hundreds of people; if the research involves DNA sequencing and the sequence information is linkable to a subject's identity and not stored securely, it may become accessible; and if the research involves banking of bodily materials and those materials can be both linked to the subject and used for DNA sequencing or testing by other researchers or at a later date, genetic information may become "public." Sequence information raises particularly difficult privacy concerns, because when we obtain sequence data, we do not necessarily understand or recognize all of the information the data contain.

Read the entire page →

From page 77...

... Federal human subjects research regulations currently are considered inadequate with respect to protecting genetic privacy, but they are under review by the National Bioethics Advisory Commission, and recommendations for their revision are forthcoming. Many states have genetic information privacy laws; however, because these laws differ from each other in fundamental ways (such as in their definitions of "genetic information")

Read the entire page →

From page 78...

... A person with a germ-line modification would have the same reproductive freedom as anybody else, and could choose whether to become a genetic parent, and whether to use assisted reproduction to prevent his or her genetic modification from being transmitted to future generations. What ethical principles or approaches should guide us as individuals or as a society in determining which genetic interventions are permissible/impermissible or obligatory?

Read the entire page →

From page 79...

... This is a principle that judges the rightness of a choice by weighing two possible future worlds against each other: If we make the better choice, there will be people who are better off, but the reason that choice was better is not because any particular people have been made better off! If we are to use impersonal principles to guide and evaluate choices about genetic interventions that affect future generations, then there are still many issues to be addressed.

Read the entire page →

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Genomics and Ethics Pages 75-80

Genomics and Ethics
Pages 75-80