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Ethics and DNA Testing: Difference between revisions
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DNA use in family history has enhanced and complicated the way that research is conducted. It is important to remember that DNA testing in genealogy is, by itself, just another source. It is a powerful source, but in the area of genetic genealogy, multiple sources should be compiled and analyzed together when gathering information. | DNA use in family history has enhanced and complicated the way that research is conducted. It is important to remember that DNA testing in genealogy is, by itself, just another source. It is a powerful source, but in the area of genetic genealogy, multiple sources should be compiled and analyzed together when gathering information. | ||
== Ethics == | ==Ethics== | ||
DNA testing has opened up new opportunities for genealogists to identify possible relationships, break down brick walls in their research, and connect with lost family members. It has also enabled law enforcement to use genetic material to identify potential suspects in criminal cases. Appropriate ethical use of DNA is still being defined by society and the law. Around the world, laws and regulations like the General Data Protection Privacy Regulation (GDPR) in the European Union to take into account or attempt to regulate the ethical use of this powerful source of information. In the United States currently there is no federal legislation regulating the use of genetic data and advocating for its ethical use. States like California have enacted laws to try to fill that void and other states are following its example. However, even with existing legislation at the state level in the US, legal is not always ethical. In general, using DNA information to harm, harass, or embarrass others is not appropriate. | DNA testing has opened up new opportunities for genealogists to identify possible relationships, break down brick walls in their research, and connect with lost family members. It has also enabled law enforcement to use genetic material to identify potential suspects in criminal cases. Appropriate ethical use of DNA is still being defined by society and the law. Around the world, laws and regulations like the General Data Protection Privacy Regulation (GDPR) in the European Union to take into account or attempt to regulate the ethical use of this powerful source of information. In the United States currently there is no federal legislation regulating the use of genetic data and advocating for its ethical use. States like California have enacted laws to try to fill that void and other states are following its example. However, even with existing legislation at the state level in the US, legal is not always ethical. In general, using DNA information to harm, harass, or embarrass others is not appropriate. | ||
Because genetic information by its very nature is very personal, but also shared with family, careful consideration needs to be given before agreeing to its disclosure or use. Furthermore, there may be unintended uses and consequences that this powerful type of information may bring. It is also important to remember that what may be ethically appropriate now in a specific geography, may not be so in different geographies or at another time in the future. Some of these issues are still being debated and defined by society and the law. | Because genetic information by its very nature is very personal, but also shared with family, careful consideration needs to be given before agreeing to its disclosure or use. Furthermore, there may be unintended uses and consequences that this powerful type of information may bring. It is also important to remember that what may be ethically appropriate now in a specific geography, may not be so in different geographies or at another time in the future. Some of these issues are still being debated and defined by society and the law. | ||
Unlike a credit card, a username or password, genetic information is permanent and once | Unlike a credit card, a username or password, genetic information is permanent and once revealed or compromised, cannot be changed or replaced. For that reason, before agreeing to anything regarding the collection, analysis and use of DNA should be carefully considered, not only for you, but also for family members. | ||
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Some who take DNA tests may also discover unexpected parental relationships, such as learning that the parent that raised them was not actually their biological parent. This is often difficult for the child involved, and can disrupt relationships. "...test takers should be prepared to handle scenarios in which they discover either new relatives or that their existing 'relatives' aren't actually biologically related."<ref>Bettinger, Blaine T. ''The Family Tree Guide to DNA Testing and Genetic Genealogy'', Family Tree Books: 2016, page 38.</ref> | Some who take DNA tests may also discover unexpected parental relationships, such as learning that the parent that raised them was not actually their biological parent. This is often difficult for the child involved, and can disrupt relationships. "...test takers should be prepared to handle scenarios in which they discover either new relatives or that their existing 'relatives' aren't actually biologically related."<ref>Bettinger, Blaine T. ''The Family Tree Guide to DNA Testing and Genetic Genealogy'', Family Tree Books: 2016, page 38.</ref> | ||
=== Privacy Laws === | ===Privacy Laws=== | ||
Generally, privacy laws surrounding DNA vary by jurisdiction (e.g. state, country). Genealogical societies in your country, specifically those interested in using DNA in research, may be able to provide you with more information. You may also wish to contact legal counsel for specific recommendations. | Generally, privacy laws surrounding DNA vary by jurisdiction (e.g. state, country). Genealogical societies in your country, specifically those interested in using DNA in research, may be able to provide you with more information. You may also wish to contact legal counsel for specific recommendations. | ||
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==For Further Discussion== | ==For Further Discussion== | ||
*[https://isogg.org/wiki/Ethics,_guidelines_and_standards Ethics, guidelines and standards] - ISOGG | *[https://isogg.org/wiki/Ethics,_guidelines_and_standards Ethics, guidelines and standards] - ISOGG | ||
*[https://bcgcertification.org/skillbuilding-the-ethics-of-dna-testing/ Skillbuilding: The Ethics of DNA Testing] - BCG | *[https://bcgcertification.org/skillbuilding-the-ethics-of-dna-testing/ Skillbuilding: The Ethics of DNA Testing] - BCG | ||
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===See Also=== | ===See Also=== | ||
*[[Hiring a DNA Testing Company]] | *[[Hiring a DNA Testing Company]] | ||
*[[DNA Basics]] | *[[DNA Basics]] | ||
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[[Category:Genetic_Research]] | [[Category:Genetic_Research]] | ||
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