| Literature DB >> 26645273 |
Susan E Wallace1, Elli G Gourna2, Viktoriya Nikolova3, Nuala A Sheehan4,5.
Abstract
BACKGROUND: Genealogical research and ancestry testing are popular recreational activities but little is known about the impact of the use of these services on clients' biological and social families. Ancestry databases are being enriched with self-reported data and data from deoxyribonucleic acid (DNA) analyses, but also are being linked to other direct-to-consumer genetic testing and research databases. As both family history data and DNA can provide information on more than just the individual, we asked whether companies, as a part of the consent process, were informing clients, and through them clients' relatives, of the potential implications of the use and linkage of their personal data.Entities:
Mesh:
Year: 2015 PMID: 26645273 PMCID: PMC4673846 DOI: 10.1186/s12910-015-0080-2
Source DB: PubMed Journal: BMC Med Ethics ISSN: 1472-6939 Impact factor: 2.652
Characteristics of companies included in the analysis
| Companies | Ancestry services based on self-reported data | Ancestry services based on a DNA sample | Ancestry services based on self-reported data and a DNA sample | Offers a Research Component in addition to other services |
|---|---|---|---|---|
| 23andMe (23andMe Research) |
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| African Ancestry |
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| African DNA |
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| Ancestry by DNA |
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| Ancestrya |
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| AncestryDNAa (Ancestry Human Diversity Project) |
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| AncestryHealtha (Ancestry Human Diversity Project) |
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| Archivesb |
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| Archivesb |
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| DNA Testing Systems |
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| DNA Tribes |
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| Family Search |
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| Family Tree DNA (various projects) |
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| FamilyLinkb,c |
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| Find My Past |
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| Genes Reunited |
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| Genib |
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| MyHeritageb,c |
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| Oxford Ancestors |
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| Roots for Real |
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| The Genealogistb |
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| World Vital Recordsb,c |
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aAncestryDNA and AncestryHealth are subsidiaries of Ancestry
bThese companies outsource DNA testing to other companies (FamilyLink, GENI and The Genealogist, World Vital Records use FTDNA; Archives use Ancestry; and MyHeritage uses FTDNA or 23andMe)
cFamilyLink, GENI and World Vital Records are subsidiaries of MyHeritage
Quotes from company privacy policy or T&C documents referring to the need to obtain consent from family members
| Company | Quote from privacy policy/T&C document |
|---|---|
| Ancestry | You should obtain the consent from the living persons about whom you want to post personal information on the Websites, or, if the person is under the age of 18, the consent of their parent or guardian [ |
| AncestryHealth | Before providing health and lifestyle information about others, you represent that you have obtained the consent from them, or, if the person is under the age of 18, the consent of their parent or guardian [ |
| Archives | […][Y]ou should only submit or share User Provided Content that belongs to you (or where you have obtained all necessary permissions or consents) and that will not violate the rights of others [ |
| Family Search | When providing personal information about anyone other than yourself, you must first obtain the other person’s informed consent if his or her consent is legally required [according to local law] [ |
| FindMyPast | You should always seek permission from people who are living before you make their personal information available in your tree, or anywhere else online. […] We reserve the right (at our own discretion) to remove any personal data which you have included in your family tree about people who are living if we are alerted to the fact that this personal data was used without that person’s permission [ |
| GenesReunited | You promise that you are the original owner of any Submission you make or you have the necessary licences, rights, consents, and permissions to authorise us to use your Submission. In particular, you promise that you have obtained the permission of all of the living people featured or referred to in the Submission (and if they are under 18 their parents’ or guardians’ permission as well).[…] You agree to give us evidence of all such licences, rights, consents, and permissions if so requested by us [ |
| Geni | [I]s prohibited to […] posting any third party’s (including without limitation any family member’s) information on the Geni Services without permission [ |
| MyHeritage | In addition you should also make sure that information or material you wish to place on the Website about anyone living is only posted with their prior knowledge and consent. If the person is under the legal age to enter into agreements (typically 18 years old), you represent that you have obtained the consent of the parent or guardian of the person under the legal age […]. In all cases, you must make the implications of the consent clear to the person (or, if applicable, to the parent/guardian) [ |