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Volumn 16, Issue 1, 2015, Pages

Family tree and ancestry inference: Is there a need for a 'generational' consent? Ethics in Biomedical Research

Author keywords

[No Author keywords available]

Indexed keywords

CONSUMER ADVOCACY; ETHICS; FINANCIAL MANAGEMENT; GENEALOGY; GENETIC PRIVACY; GENETIC SCREENING; HUMAN; INFORMATION RETRIEVAL; INFORMED CONSENT; INTERNET; LEGISLATION AND JURISPRUDENCE; PEDIGREE; RESEARCH ETHICS;

EID: 84949559045     PISSN: None     EISSN: 14726939     Source Type: Journal    
DOI: 10.1186/s12910-015-0080-2     Document Type: Article
Times cited : (11)

References (54)
  • 1
    • 73649116737 scopus 로고    scopus 로고
    • Genealogical Tourism: A Phenomenological Examination
    • Santos CA, Yan G. Genealogical Tourism: A Phenomenological Examination. J Travel Res. 2010;49(1):56-67. doi: 10.1177/0047287509332308.
    • (2010) J Travel Res , vol.49 , Issue.1 , pp. 56-67
    • Santos, C.A.1    Yan, G.2
  • 2
    • 77952574849 scopus 로고    scopus 로고
    • Uncovering the roles of rare variants in common disease through whole-genome sequencing
    • Cirulli ET, Goldstein DB. Uncovering the roles of rare variants in common disease through whole-genome sequencing. Nat Rev Genet. 2010;11:415-25.
    • (2010) Nat Rev Genet , vol.11 , pp. 415-425
    • Cirulli, E.T.1    Goldstein, D.B.2
  • 3
    • 79959378465 scopus 로고    scopus 로고
    • Family-based designs for genome-wide association studies
    • Ott J, Kamatani Y, Lathrop M. Family-based designs for genome-wide association studies. Nat Rev Genet. 2011;12(7):465-74.
    • (2011) Nat Rev Genet , vol.12 , Issue.7 , pp. 465-474
    • Ott, J.1    Kamatani, Y.2    Lathrop, M.3
  • 4
    • 84866730927 scopus 로고    scopus 로고
    • The role of large pedigrees in an era of high through-put sequencing
    • Wijsman EM. The role of large pedigrees in an era of high through-put sequencing. Human Gen. 2013;131:1555-63.
    • (2013) Human Gen , vol.131 , pp. 1555-1563
    • Wijsman, E.M.1
  • 5
    • 84922288800 scopus 로고    scopus 로고
    • University of Washington Center for Mendelian G, Nickerson da et al. PRIMUS: Rapid reconstruction of pedigrees from genome-wide estimates of identity by descent
    • Staples J, Qiao D, Cho MH, Silverman EK. University of Washington Center for Mendelian G, Nickerson DA et al. PRIMUS: rapid reconstruction of pedigrees from genome-wide estimates of identity by descent. Am J Hum Genet. 2014;95(5):553-64. doi: 10.1016/j.ajhg.2014.10.005.
    • (2014) Am J Hum Genet , vol.95 , Issue.5 , pp. 553-564
    • Staples, J.1    Qiao, D.2    Cho, M.H.3    Silverman, E.K.4
  • 6
    • 84871063192 scopus 로고    scopus 로고
    • Maximum likelihood pedigree reconstruction using integer linear programming
    • Cussens J, Bartlett M, Jones EM, Sheehan NA. Maximum likelihood pedigree reconstruction using integer linear programming. Genet Epidemiol. 2013;37:69-83.
    • (2013) Genet Epidemiol , vol.37 , pp. 69-83
    • Cussens, J.1    Bartlett, M.2    Jones, E.M.3    Sheehan, N.A.4
  • 7
    • 84908330325 scopus 로고    scopus 로고
    • Improved maximum likelihood reconstruction of complex multi-generational pedigrees
    • Sheehan NA, Bartlett M, Cussens J. Improved maximum likelihood reconstruction of complex multi-generational pedigrees. Theor Popul Biol. 2014;97:11-9.
    • (2014) Theor Popul Biol , vol.97 , pp. 11-19
    • Sheehan, N.A.1    Bartlett, M.2    Cussens, J.3
  • 8
    • 0038620466 scopus 로고    scopus 로고
    • A simulated annealing algorithm for maximum likelihood pedigree reconstruction
    • Almudevar A. A simulated annealing algorithm for maximum likelihood pedigree reconstruction. Theor Popul Biol. 2013;63:63-75.
    • (2013) Theor Popul Biol , vol.63 , pp. 63-75
    • Almudevar, A.1
  • 9
    • 84873464244 scopus 로고    scopus 로고
    • A simple greedy algorithm for reconstructing pedigrees
    • Cowell RG. A simple greedy algorithm for reconstructing pedigrees. Theor Popul Biol. 2013;83:55-63.
    • (2013) Theor Popul Biol , vol.83 , pp. 55-63
    • Cowell, R.G.1
  • 10
    • 84859330504 scopus 로고    scopus 로고
    • Consent and confidentiality in clinical genetic practice: Guidance on genetic testing and sharing genetic information
    • Lucassen A, Hall A. Consent and confidentiality in clinical genetic practice: guidance on genetic testing and sharing genetic information. Clin Med. 2012;12(1):5-6.
    • (2012) Clin Med , vol.12 , Issue.1 , pp. 5-6
    • Lucassen, A.1    Hall, A.2
  • 11
    • 84857033974 scopus 로고    scopus 로고
    • Ethical implications of new genetic technologies
    • Lucassen A. Ethical implications of new genetic technologies. Dev Med Child Neurol. 2012;54(3):196. doi: 10.1111/j.1469-8749.2011.04182.x.
    • (2012) Dev Med Child Neurol , vol.54 , Issue.3 , pp. 196
    • Lucassen, A.1
  • 12
    • 84949603677 scopus 로고    scopus 로고
    • ASHG. Ancestry Testing Statement. American Society of Human Genetics Accessed 05/12/2015
    • ASHG. Ancestry Testing Statement. American Society of Human Genetics. 2008. http://www.ashg.org/pdf/ASHGAncestryTestingStatement-Final.pdf. Accessed 05/12/2015.
    • (2008)
  • 14
    • 38449088688 scopus 로고    scopus 로고
    • American Society of Human Genetics Social Issues C. ASHG Statement on direct-to-consumer genetic testing in the United States
    • Hudson K, Javitt G, Burke W, Byers P. American Society of Human Genetics Social Issues C. ASHG Statement on direct-to-consumer genetic testing in the United States. Obstet Gynecol. 2007;110(6):1392-5. doi: 10.1097/01.AOG.0000292086.98514.8b.
    • (2007) Obstet Gynecol , vol.110 , Issue.6 , pp. 1392-1395
    • Hudson, K.1    Javitt, G.2    Burke, W.3    Byers, P.4
  • 15
    • 63149139643 scopus 로고    scopus 로고
    • Consent and population genomics: The creation of generic tools
    • Wallace S, Lazor S, Knoppers BM. Consent and population genomics: The creation of generic tools. IRB. 2009;31(2):15-20.
    • (2009) IRB , vol.31 , Issue.2 , pp. 15-20
    • Wallace, S.1    Lazor, S.2    Knoppers, B.M.3
  • 17
    • 27844518793 scopus 로고    scopus 로고
    • Three Approaches to Qualitative Content Analysis
    • Hsieh HF, Shannon SE. Three Approaches to Qualitative Content Analysis. Qual Health Res. 2005;15(9):1277-88.
    • (2005) Qual Health Res , vol.15 , Issue.9 , pp. 1277-1288
    • Hsieh, H.F.1    Shannon, S.E.2
  • 18
    • 84949603679 scopus 로고    scopus 로고
    • Ancestry.com Accessed 05/12/2015
    • Ancestry.com. Ancestry Launches AncestryHealth. 2015. http://corporate.ancestry.com/press/press-releases/2015/07/ancestry-launches-ancestryhealth/. Accessed 05/12/2015.
    • (2015) Ancestry Launches AncestryHealth
  • 19
    • 84949568350 scopus 로고    scopus 로고
    • GenesReunited Accessed 05/12/2015
    • GenesReunited. Terms and Conditions. 2015. http://www.genesreunited.co.uk/contents/legaltermsandconditions. Accessed 05/12/2015.
    • (2015) Terms and Conditions
  • 20
    • 84949568350 scopus 로고    scopus 로고
    • FindMyPast
    • FindMyPast. Terms and Conditions. 2015. http://www.findmypast.co.uk/content/terms-and-conditions. Accessed 05/12/2015.
    • (2015) Terms and Conditions
  • 21
    • 84949545114 scopus 로고    scopus 로고
    • Accessed 05/12/2015
    • OxfordAncestors. Privacy Policy. 2015. http://www.oxfordancestors.com/content/view/26/44/. Accessed 05/12/2015.
    • (2015) Privacy Policy
  • 22
    • 84949545114 scopus 로고    scopus 로고
    • AfricanAncestry http://www.africanancestry.com/privacy/ Accessed 05/12/2015
    • AfricanAncestry. Privacy Policy. 2015. http://www.africanancestry.com/privacy/. Accessed 05/12/2015.
    • (2015) Privacy Policy
  • 23
    • 33747379538 scopus 로고    scopus 로고
    • UK Government Accessed 05/12/2015
    • UK Government. Human Tissue Act 2004 c30. 2004. http://www.legislation.gov.uk/ukpga/2004/30/contents. Accessed 05/12/2015.
    • (2004) Human Tissue Act 2004 c30
  • 25
    • 84949545114 scopus 로고    scopus 로고
    • Accessed 05/12/2015
    • AncestryDNA. Privacy Policy. 2015. http://dna.ancestry.co.uk/legal/privacyStatement. Accessed 05/12/2015.
    • (2015) Privacy Policy
  • 26
    • 84899022746 scopus 로고    scopus 로고
    • 23andMe Accessed 05/12/2015
    • 23andMe. Privacy Policy. 2014. https://www.23andme.com/en-gb/about/privacy/. Accessed 05/12/2015.
    • (2014) Privacy Policy
  • 27
    • 84949603681 scopus 로고    scopus 로고
    • Ancestry Ancestry Privacy Centre Accessed 05/12/2015
    • Ancestry. Ancestry Privacy Centre. 2015. http://www.ancestry.co.uk/cs/legal/privacyphilosophy. Accessed 05/12/2015.
    • (2015)
  • 29
    • 84949603683 scopus 로고    scopus 로고
    • The Genographic Project Accessed 05/12/2015
    • TheGenographicProject. The Genographic Project - About. 2015. https://genographic.nationalgeographic.com/about/. Accessed 05/12/2015.
    • (2015) The Genographic Project about
  • 31
    • 84938097301 scopus 로고    scopus 로고
    • Ancestry DNA Accessed 05/12/2015
    • AncestryDNA. AncestryDNA - Frequently Asked Questions. 2015. http://dna.ancestry.co.uk/legal/faq. Accessed 05/12/2015.
    • (2015) AncestryDNA - Frequently Asked Questions
  • 32
    • 84949603685 scopus 로고    scopus 로고
    • AncestryDNA Accessed 05/12/2015
    • AncestryDNA. AncestryDNA Informed Consent. 2015. http://dna.ancestry.co.uk/legal/consentAgreement. Accessed 05/12/2015.
    • (2015) Ancestry DNA Informed Consent
  • 33
    • 84949544442 scopus 로고    scopus 로고
    • Ancestry Health Accessed 05/12/15
    • AncestryHealth. Informed Consent. 2015. https://health.ancestry.com/account/informedconsent. Accessed 05/12/15.
    • (2015) Informed Consent
  • 35
    • 84949603687 scopus 로고    scopus 로고
    • 23andMe Accessed 05/12/2015
    • 23andMe. SNPWatch & 23andMe Research Findings: Migraines and the Speed of Science. 2011. http://blog.23andme.com/23andme-research/snpwatch/snpwatch-23andme-research-findings-migraines-and-the-speed-of-science/#fHcA4EOM02mm8LOv.99. Accessed 05/12/2015.
    • (2011) SNPWatch & 23andMe Research Findings: Migraines and the Speed of Science
  • 36
    • 84949603688 scopus 로고    scopus 로고
    • 23andMe. Accessed 05/12/2015
    • 23andMe. Research Consent Document. 2015. https://www.23andme.com/en-gb/about/consent/. Accessed 05/12/2015.
    • (2015) Research Consent Document
  • 37
    • 0032503647 scopus 로고    scopus 로고
    • Privacy and confidentiality in the publication of pedigrees: A survey of investigators and biomedical journals
    • Botkin JR, McMahon WM, Smith KR, Nash JE. Privacy and confidentiality in the publication of pedigrees: A survey of investigators and biomedical journals. JAMA. 1998;279(22):1808-12. doi: 10.1001/jama.279.22.1808.
    • (1998) JAMA , vol.279 , Issue.22 , pp. 1808-1812
    • Botkin, J.R.1    McMahon, W.M.2    Smith, K.R.3    Nash, J.E.4
  • 38
    • 0035835031 scopus 로고    scopus 로고
    • Protecting the privacy of family members in survey and pedigree research
    • Botkin J. Protecting the privacy of family members in survey and pedigree research. JAMA. 2001;285(2):207-11.
    • (2001) JAMA , vol.285 , Issue.2 , pp. 207-211
    • Botkin, J.1
  • 39
    • 34748885498 scopus 로고    scopus 로고
    • Re-identification of familial database records
    • Malin B. Re-identification of familial database records. AMIA Annu Symp Proc. 2006:524-8
    • (2006) AMIA Annu Symp Proc , pp. 524-528
    • Malin, B.1
  • 41
    • 84872459720 scopus 로고    scopus 로고
    • Identifying Personal Genomes by Surname Inference
    • Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y. Identifying Personal Genomes by Surname Inference. Science. 2013;339(6117):321-4. doi: 10.1126/science.1229566.
    • (2013) Science , vol.339 , Issue.6117 , pp. 321-324
    • Gymrek, M.1    McGuire, A.L.2    Golan, D.3    Halperin, E.4    Erlich, Y.5
  • 42
    • 34447528655 scopus 로고    scopus 로고
    • Should families own genetic information? Yes
    • Lucassen A. Should families own genetic information? Yes. BMJ. 2007;335(7609):22. doi: 10.1136/bmj.39252.386030.AD.
    • (2007) BMJ , vol.335 , Issue.7609 , pp. 22
    • Lucassen, A.1
  • 43
    • 34447528655 scopus 로고    scopus 로고
    • Should families own genetic information? No
    • Clarke A. Should families own genetic information? No. BMJ. 2007;335(7609):23. doi: 10.1136/bmj.39252.392940.AD.
    • (2007) BMJ , vol.335 , Issue.7609 , pp. 23
    • Clarke, A.1
  • 44
    • 69649102204 scopus 로고    scopus 로고
    • Is there a duty to share genetic information?
    • Liao SM. Is there a duty to share genetic information? J Med Ethics. 2009;35(5):306-9. doi: 10.1136/jme.2008.027029.
    • (2009) J Med Ethics , vol.35 , Issue.5 , pp. 306-309
    • Liao, S.M.1
  • 45
    • 84951574276 scopus 로고    scopus 로고
    • Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research
    • Middleton A, Morley KI, Bragin E, Firth HV, Hurles ME, Wright CF et al. Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research. Eur J Hum Genet. 2015. doi: 10.1038/ejhg.2015.58
    • (2015) Eur J Hum Genet
    • Middleton, A.1    Morley, K.I.2    Bragin, E.3    Firth, H.V.4    Hurles, M.E.5    Et Al. F, W.C.6
  • 46
    • 84949563038 scopus 로고    scopus 로고
    • I had genetic testing without consent
    • Lucassen A. I had genetic testing without consent. Narrat Inq Bioethics. 2015;5(3):214-16.
    • (2015) Narrat Inq Bioethics , vol.5 , Issue.3 , pp. 214-216
    • Lucassen, A.1
  • 47
    • 84949603690 scopus 로고    scopus 로고
    • Genes Reunited Accessed 05/12/2015
    • GenesReunited. Genes Reunited - Account sign in. 2015. http://www.genesreunited.co.uk/account/welcome?NextPage=%2fhome%2findex. Accessed 05/12/2015.
    • (2015) Genes Reunited - Account Sign in
  • 48
    • 84949549464 scopus 로고    scopus 로고
    • Ancestry Accessed 05/12/2015
    • Ancestry. Privacy Statement. 2015. http://www.ancestry.com/cs/legal/privacystatement. Accessed 05/12/2015.
    • (2015) Privacy Statement
  • 49
    • 84949568350 scopus 로고    scopus 로고
    • Ancestry Health Accessed 05/12/2015
    • AncestryHealth. Terms and Conditions. 2015. https://health.ancestry.com/account/termsandconditions. Accessed 05/12/2015.
    • (2015) Terms and Conditions
  • 50
    • 84949568350 scopus 로고    scopus 로고
    • Archives Accessed 05/12/2015
    • Archives. Terms and Conditions. 2015. http://www.archives.com/uk/terms/2. Accessed 05/12/2015.
    • (2015) Terms and Conditions
  • 51
    • 84899022746 scopus 로고    scopus 로고
    • Family Search Accessed 05/12/2015
    • FamilySearch. Privacy Policy. 2014. https://familysearch.org/privacy/. Accessed 05/12/2015.
    • (2014) Privacy Policy
  • 52
    • 84949545114 scopus 로고    scopus 로고
    • Find My Past Accessed 05/12/2015
    • FindMyPast. Privacy Policy. 2015. http://www.findmypast.co.uk/content/privacy-policy. Accessed 05/12/2015.
    • (2015) Privacy Policy
  • 53
    • 84904547976 scopus 로고    scopus 로고
    • Geni Accessed 05/12/2015
    • Geni. Terms of Use. 2013. https://www.geni.com/company/terms-of-use. Accessed 05/12/2015.
    • (2013) Terms of Use
  • 54
    • 84874183760 scopus 로고    scopus 로고
    • My Heritage Accessed 05/12/2015
    • MyHeritage. Privacy Policy. 2012. http://www.myheritage.com/FP/Company/popup.php?p=privacy-policy. Accessed 05/12/2015.
    • (2012) Privacy Policy


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.