1887

Ethical Considerations Regarding Classroom Use of Personal Genomic Information

    Authors: Lisa S. Parker1,*, Robin Grubs2
    VIEW AFFILIATIONS HIDE AFFILIATIONS
    Affiliations: 1: Department of Human Genetics and Center for Bioethics and Health Law, University of Pittsburgh, Pittsburgh, PA 15260; 2: Department of Human Genetics, University of Pittsburgh, Pittsburgh, PA 15260
    AUTHOR AND ARTICLE INFORMATION AUTHOR AND ARTICLE INFORMATION
    • Published 15 December 2014
    • *Corresponding author. Mailing address: Department of Human Genetics and Center for Bioethics and Health Law, University of Pittsburgh, 519 Barco Law Building, 3900 Forbes Ave., Pittsburgh, PA 15260. Phone: 412-648-7007. Fax: 412-648-2649. E-mail: [email protected].
    • ©2014 Author(s). Published by the American Society for Microbiology.
    Source: J. Microbiol. Biol. Educ. December 2014 vol. 15 no. 2 191-196. doi:10.1128/jmbe.v15i2.856
MyBook is a cheap paperback edition of the original book and will be sold at uniform, low price.
  • HTML
    60.05 Kb
  • PDF
    208.55 Kb
  • XML

    Abstract:

    Rapidly decreasing costs of genetic technologies—especially next-generation sequencing—and intensifying need for a clinical workforce trained in genomic medicine have increased interest in having students use personal genomic information to motivate and enhance genomics education. Numerous ethical issues attend classroom/pedagogical use of students’ personal genomic information, including their informed decision to participate, pressures to participate, privacy concerns, and psychosocial sequelae of learning genomic information. This paper addresses these issues, advocates explicit discussion of these issues to cultivate students’ ethical reasoning skills, suggests ways to mitigate potential harms, and recommends collection of ethically relevant data regarding pedagogical use of personal genomic information.

References & Citations

1. Boguski MS, Boguski RM, Berman MR 2013 Personal genotypes are teachable moments Genome Med 5 22 10.1186/gm426 23514125 3706876 http://dx.doi.org/10.1186/gm426
2. Burke A 12 January 2012 posting date. DNA sequencing is now improving faster than Moore’s Law! Forbes [Online.] http://www.forbes.com/sites/techonomy/2012/01/12/dna-sequencing-is-now-improving-faster-than-moores-law/
3. Callier SL 2012 Swabbing students: should universities be allowed to facilitate educational DNA testing? Am. J. Bioeth. 12 4 32 40 10.1080/15265161.2012.656803 22452475 3390747 http://dx.doi.org/10.1080/15265161.2012.656803
4. Daley LA, et al 2013 Personal DNA testing in college classrooms: perspectives of students and professors Genet Test Mol Biomarkers 6 446 452 10.1089/gtmb.2012.0404 http://dx.doi.org/10.1089/gtmb.2012.0404
5. Daly E 13 April 2005 posting date DNA tells students they aren’t who they thought New York Times [Online.] http://www.nytimes.com/2005/04/13/nyregion/13penn.html?_r=0
6. Estes R 18 December 2012 posting date Proving Native American ancestry using DNA DNAeXplained [Online.] http://dna-explained.com/2012/12/18/proving-native-american-ancestry-using-dna/
7. Forrow L, Arnold R, Parker LS 1993 Preventive ethics: expanding the horizons of clinical ethics J Clin Ethics 4 287 294 7803823
8. Grubs RE, Parker LS, Hamilton RJ 2014 Subtle psychosocial sequelae of genetic test results Curr. Genet. Med. Rep. [Online.] http://link.springer.com/article/10.1007%2Fs40142-014-0053-7 10.1007/s40142-014-0053-7 http://dx.doi.org/10.1007/s40142-014-0053-7
9. Hamilton R 2012 Being young, female, and BRCA positive Am J Nurs 112 26 31 10.1097/01.NAJ.0000421021.62295.3b 22982855 http://dx.doi.org/10.1097/01.NAJ.0000421021.62295.3b
10. Hamilton RJ, Hurley KE 2010 Conditions and consequences of a BRCA mutation in young, single women of childbearing age Oncol Nurs Forum 37 627 634 10.1188/10.ONF.627-634 20797954 http://dx.doi.org/10.1188/10.ONF.627-634
11. Hamilton RJ, Williams JK, Bowers BJ, Calzone K 2008 Life trajectories, genetic testing, and risk reduction decisions in 18–39-year-old women at risk for hereditary breast and ovarian cancer J Genet Couns 18 147 154 10.1007/s10897-008-9200-1 http://dx.doi.org/10.1007/s10897-008-9200-1
12. Harmon A 11 November 2007 posting date In DNA era: new worries about prejudice New York Times [Online.] http://www.nytimes.com/2007/11/11/us/11dna.html?pagewanted=all
13. Haspel RL, et al 2010 A call to action: training pathology residents in genomics and personalized medicine Am J Clin Pathol 133 832 834 10.1309/AJCPN6Q1QKCLYKXM 20472839 http://dx.doi.org/10.1309/AJCPN6Q1QKCLYKXM
14. Hayden EC 15 January 2014 posting date Is the $1,000 genome for real? Nature [Online.] http://www.nature.com/news/is-the-1-000-genome-for-real-1.14530
15. Karczewski KJ, et al 2012 Interpretome: a freely available, modular, and secure personal genome interpretation engine Pac Symp Biocomput 2012 339 350
16. Kuehn BM 2010 Inconsistent results, inaccurate claims plague direct-to-consumer gene tests JAMA 304 12 1313 1315 10.1001/jama.2010.1328 20858870 http://dx.doi.org/10.1001/jama.2010.1328
17. Ormond KE, Hudgins L, Ladd JM, Magnus DM, Greely HT, Cho MK 2011 Medical and graduate students’ attitudes toward personal genomics Genet Med 13 400 408 10.1097/GIM.0b013e31820562f6 21270640 http://dx.doi.org/10.1097/GIM.0b013e31820562f6
18. Rogers JC, Taylor ATS 2011 Teaching about genetic testing issues in the undergraduate classroom: a case study J. Gen. Couns. 20 3 231 240 10.1007/s10897-011-9352-2 http://dx.doi.org/10.1007/s10897-011-9352-2
19. Salari K, Karczewski KJ, Hudgins L, Ormond KE 23 July 2013 posting date Evidence that personal genome testing enhances student learning in a course on genomics and personalized medicine PLoS One 8 7 e68853 [Online.] 10.1371/journal.pone.0068853 23935898 3720862 http://dx.doi.org/10.1371/journal.pone.0068853
20. Sanderson CS, et al 2013 Informed decision-making among students analyzing their personal genomes on a whole genome sequencing course: a longitudinal cohort study Genome Med 5 113 3 10.1186/gm518 http://dx.doi.org/10.1186/gm518
21. Soto-Cruz I, Legorreta-Herrera M 2009 Analysis of a p53 mutation associated with cancer susceptibility for biochemistry and genetic laboratory courses Biochem Mol Biol Educ 37 236 242 10.1002/bmb.20304 21567743 http://dx.doi.org/10.1002/bmb.20304
22. Taylor K 13 October 2011 posting date Bitter fight to determine who is an American Indian turns to DNA testing. Indian Country Today Medical Network [Online.] http://indiancountrytodaymedianetwork.com/2011/10/13/bitter-fight-determine-who-american-indian-turns-dna-testing-57165
23. U.S. Department of Health and Human Services Code of Federal Regulations. Title 45 – Public Welfare CFR 46
24. U.S. Food and Drug Administration 1 September 2014 posting date 23andMe, Inc. Warning letter 2013 [Online.] http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2013/ucm376296.htm
25. Walt DR, et al 2011 Lessons learned from the introduction of personalized genotyping into a medical school curriculum Genet Med 13 63 66 10.1097/GIM.0b013e3181f872ac http://dx.doi.org/10.1097/GIM.0b013e3181f872ac
26. Weijer C, Emanuel EJ 2000 Protecting communities in biomedical research Science 289 5482 1142 1144 10.1126/science.289.5482.1142 10970227 http://dx.doi.org/10.1126/science.289.5482.1142
27. Werner-Lin A 2008 Beating the biological clock: the compressed family life cycle of young women with BRCA gene alterations Soc Work Health Care 47 416 437 10.1080/00981380802173509 19042494 http://dx.doi.org/10.1080/00981380802173509
28. Wolf SM, et al 2008 Managing incidental findings in human subjects research: analysis and recommendations J. Law Med. Ethics 36 2 219 248 10.1111/j.1748-720X.2008.00266.x 18547191 2575242 http://dx.doi.org/10.1111/j.1748-720X.2008.00266.x

Supplemental Material

No supplementary material available for this content.

Loading

Article metrics loading...

/content/journal/jmbe/10.1128/jmbe.v15i2.856
2014-12-15
2021-01-24

Abstract:

Rapidly decreasing costs of genetic technologies—especially next-generation sequencing—and intensifying need for a clinical workforce trained in genomic medicine have increased interest in having students use personal genomic information to motivate and enhance genomics education. Numerous ethical issues attend classroom/pedagogical use of students’ personal genomic information, including their informed decision to participate, pressures to participate, privacy concerns, and psychosocial sequelae of learning genomic information. This paper addresses these issues, advocates explicit discussion of these issues to cultivate students’ ethical reasoning skills, suggests ways to mitigate potential harms, and recommends collection of ethically relevant data regarding pedagogical use of personal genomic information.

Highlighted Text: Show | Hide
Loading full text...

Full text loading...

/deliver/fulltext/jmbe/15/2/jmbe-15-191.xml.a.html?itemId=/content/journal/jmbe/10.1128/jmbe.v15i2.856&mimeType=html&fmt=ahah

Author and Article Information

  • Published 15 December 2014
  • *Corresponding author. Mailing address: Department of Human Genetics and Center for Bioethics and Health Law, University of Pittsburgh, 519 Barco Law Building, 3900 Forbes Ave., Pittsburgh, PA 15260. Phone: 412-648-7007. Fax: 412-648-2649. E-mail: [email protected].
  • ©2014 Author(s). Published by the American Society for Microbiology.

Back to top
This is a required field
Please enter a valid email address
Please check the format of the address you have entered.
Approval was a Success
Invalid data
An Error Occurred
Approval was partially successful, following selected items could not be processed due to error