Student Centered Education

Commentary: 23andMe. . .and You?

Received for publication, November 14, 2011

Ann Taylor‡

From the Department of Chemistry, Wabash College, Crawfordsville, Indiana 47933

With something as simple as a cheek swab, a cush-ioned mailing envelope and a couple of 100 dollars, per-sonal direct to consumer (DTC) genetics companies suchas 23andme, MapMyGene, deCODE Genetics, Lumigen-ics, and 15 other companies allow individuals to ordergenetic tests without a physician’s order [1]. The compa-nies advertise their services as a way to find out aboutyour health risks, ancestry, and even inborn talents [2].The same technology can be used by doctors to deter-mine if a particular chemotherapy agent will treat a par-ticular type of cancer. As a community of biomoleculareducators, what is our responsibility to teach studentsabout the appropriate use of these services?

Teaching students about the mechanics of how genetictesting is done is relatively straightforward. The basicDNA manipulation techniques of PCR amplification, SNPanalysis, and RFLP mapping are often taught in biomo-lecular science classes and provide an opportunity toeducate students about these methods. There are anumber of laboratory activities that incorporate theseprinciples (reviewed in ref. [3]).

Although the DTC companies emphasize the consum-er’s right to know and the importance of consulting withyour family physician, there are significant ethical con-cerns with the use of these tests. First is the concernabout incorrect results; how do you know the results areaccurate? Most clinical laboratory tests use protocolsthat have been approved by the FDA, but the proceduresused by the DTC companies have not been regulated bythe FDA [4].Moreover, many phenotypes are the result ofseveral genes. Consequently, it is important for educa-tors to discuss the complexity of going from genotype tophenotype and the probability of false positives or nega-tives in genetic testing.

A more concerning aspect is the ability of a consumerto correctly interpret the data provided to them. One ofthe main principles of genetic counseling is the need forinformed consent, which encompasses a patient’s under-standing of the test, the disease, the possible results,and the ramifications of these results [5]. It is not obviousthat DTC companies provide full information on these

topics, and even if they are available on their websites, itis no guarantee that consumers will either read or under-stand them. DTC companies recommend consumersshould consult with their primary physicians about theirresults, yet only 10% of primary care physicians feelcomfortable ordering genetic tests [6], let alone inter-preting tests they did not order. As our students will bethose consumers or practitioners, it is imperative that weprovide them (or that they generate) complex data setsthat require higher order thinking skills to analyze andinterpret [7].

There is also the question of the ethics of data sharing.Some of the DTC sites promote the use of genetic infor-mation in a social networking context—find your relativeswith your DNA sequence! This raises the question of whoshould have access to personal genetic testing results—should you employer? Or health insurance provider?While the Genetic Information Nondiscrimination Act of2008 [8] expressly prohibits these uses, it does not pre-vent use by life long-term care or disability insurance,and discrimination is hard to prove. There are no controlson DTC companies selling their information or using it inresearch applications; in fact, their websites promote theuse of the information for research purposes. There arealso issues concerning privacy for relatives, as findingout your personal genetics implies information aboutyour parents. There are many shades of gray in thesedecisions, so incorporating discussions of ethicsbecomes even more important in the BMB classroom [9].

So as educators, how do we deal with this issue?Luckily for us, there are numerous resources for usingstudent-centered approaches to teach about genetictesting. There are a number of case studies at theNational Center for Case Study Teaching in Science [10]as well as resources from the Personal Genetics Educa-tion Project [11], MyDNA [12], Cold Spring Harbor [13],American Association for the Advancement of Science[14], and the National Center for Biotechnology Informa-tion [15]. While this list is not all-inclusive, it providesideas and resources for ways to discuss this rich andcomplex topic with students. Even without specific refer-ence to genetic testing, we can help students to practicethe experimental error source identification, data analysisskills, and ethical behaviors required to make these typesof complex decisions.

‡ To whom correspondence should be addressed. Tel.: (765)361-6186; E-mail: taylora@wabash.edu.

This paper is available on line at http://www.bambed.org DOI 10.1002/bmb.2058363

Q 2011 by The International Union of Biochemistry and Molecular Biology BIOCHEMISTRY AND MOLECULAR BIOLOGY EDUCATION

Vol. 40, No. 1, pp. 63–64, 2012

REFERENCES

[1] R. Dvoskin, GPPC releases updated list of DTC genetic testingcompanies, Available at http://www.dnapolicy.org/news.release.php?action¼detail&pressrelease_id¼145, accessed November 7, 2011.

[2] Available at https://www.23andme.com/; http://www.decodeme.com/complete-genetic-scanhttp://www.mapmygene.com/product.htm,accessed November 7, 2011.

[3] A. T. Taylor, J. C. Rogers (2011) The ethical implications of genetictesting in the classroom, Biochem. Mol. Biol. Educ. 39, 253–260.

[4] A. L. McGuire, B. M. Evans, T. Caulfield, W. Burke (2010) Regulatingdirect-to-consumer personal genome testing, Science 330, 181–182.

[5] W. C. McKinnon, B. J. Baty, R. L. Bennett, M. Magee, W. A. Neu-feld-Kaiser, K. F. Peters, J. C. Sawyer, K. A. Schneider (1997) Pre-disposition genetic testing for late-onset disorders in adults: A posi-tion paper of the National Society of Genetic Counselors, JAMA278, 1217–1220.

[6] N. Canavan (2011) Primary Care: You Do Need to Know AboutGenomics—Here’s Why, Available at: http://www.medscape.com/viewarticle/750831_print, accessed November 11, 2011.

[7] H. White (2011) Commentary: Analysis of examination questionsexpose low faculty expectations, Biochem. Mol. Biol. Educ. 39,457–458.

[8] Public Law 110-233 (2008) Genetic Information NondiscriminationAct of 2008, Available at: http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname¼110_cong_public_laws&docid¼f:publ233.110.pdf.

[9] M. J. Costa (2011) A role for student centered education in promot-ing academic and scientific integrity, Biochem. Mol. Biol. Educ. 39,316–317.

[10] Case Studies Involving Genetic Testing, Available at http://sciencecases.lib.buffalo.edu/cs/collection/results.asp?search¼%22geneticþtesting%22&subject_headings¼&educational_level¼&type_methods¼&topical_areas¼, accessed November 11, 2011.

[11] Personal Genetics Education Project, Available at: http://www.pged.org/, accessed August 31, 2011.

[12] MyDNA, Available at: http://www.biochem.umass.edu/mydna/,accessed November 11, 2011.

[13] DNA Interactive, Available at: http://www.dnai.org, Cold SpringHarbor, accessed November 11, 2011.

[14] C. Baker (1999) Your Genes, Your Choices, AAAS Directorate forEducation and Human Resources, Available at: http://ehrweb.aaas.org/ehr/books/.

[15] Gene Tests: Educational Materials, Available at http://www.ncbi.nlm.nih.gov/projects/GeneTests/static/concepts/conceptsindex.shtml,accessed November 11, 2011.

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