Análisis del expediente

RS thanks Kurt M. Ribisl, Felicia E. Mebane, and Robert C. Millikan for their guidance in the design of this study. RS greatly appreciates the anonymous reviewers of this manuscript for their thoughtful critique. Funding for this research was provided by a National Research Service Award (NRSA) Pre-Doctoral Traineeship (to RS), Agency for Healthcare Research and Quality (AHRQ) Grant No. T32-HS000034; the Carolina Center for Genomics and Public Health, Center for Disease Control and Prevention (CDC) Grant No. S1958-21; The University of North Carolina at Chapel Hill (UNC) Center for Excellence in ELSI Research, National Human Genome Research Institute

(NHGRI) Grant No. P20-HG003387; The UNC Cecil G. Sheps Center for Health Services Research; and the UNC School of Public Health Sandra Winn Green Scholarship Fund in Public Health.

References

ABC Television. Genetic testing; GAO report regarding genetic kits [transcript]. “ABC Inside the Newsroom.” July 27, 2006.

American College of Medicine Genetics (ACMG) Board of Directors. ACMG statement on direct-to- consumer genetic testing. Genetics In Medicine 2004;6(1):60.

Berg C, Fryer-Edwards K. The ethical challenges of direct-to-consumer genetic testing. JBE 2008;77:17–31.

Bernhardt JM, Lariscy RAW, Parrott RL, Silk KJ, et al. Perceived barriers to internet-based health communications on human genetics. J Health Commun 2002;7(4):325-40.

Boyer C, Selby M, Scherrer JR, Appel RD. The Health On the Net code of conduct for medical and health web sites. Comput Biol Med 1998;28(5):603-10.

Business Wire. CyGene Laboratories announces new Spanish-language website to promote genetic testing products to Hispanic market. September 13, 2006. Available at

http://www.hispanicprwire.com/news.php?l=in&id=6991&cha=9 Accessed: July 2, 2008.

Business Wire. Health engineering group teams up with Sciona to distribute the MyCellf(TM) DNA Fitness Program into 20,000 fitness & wellness facilities nationwide. March 6, 2008. Available at http://www.reuters.com/article/pressRelease/idUS165136+06-Mar-2008+BW20080306 Accessed: July 2, 2008.

Cedars-Sinai GenRISK® Adult Genetics Program. Genetic testing: Potential risks and limitations of testing. Available at http://www.csmc.edu/991.html Accessed: October 15, 2006

Coyle JR, Thorson E. The effects of progressive levels of interactivity and vividness in web marketing sites. Journal of Advertising 2001;30(3):65-77.

Cygene Laboratories [1]. Q: How accurate are the results? Available at https://207.36.181.182/ Physicians/t-faq.aspx Accessed: October 15, 2006.

Cygene Laboratories [2]. Why take a genetic test: Reducing the risks. Available at

https://cygenedirect.com/dna-testing/dna-testing_reducing_the_risks.html Accessed: October 15, 2006.

Deen EW. Review of process and outcome of inter-meeting priority setting effort and presentation of 12 high priority issues. Report of the SACGHS Task Force presented at the third meeting of the Secretary’s Advisory Committee of Genetics, Health and Society, March 1-2, 2004. Available at http://www4.od.nih.gov/oba/SACGHS/meetings/March2004/WinnDeen.pdf Accessed: April 2, 2008. Elliot R, Pico C, Dommels Y, et al. Nutrigenomic approaches for benefit-risk analysis of foods and food components: Defining markers of health. Br J Nutr 2007;98:1095–1100.

Eysenbach G, Kohler C. How do consumers search for and appraise health information on the World Wide Web? Qualitative study using focus groups, usability tests, and in-depth interviews. Br Med J 2002;324:573-577.

Fox S, 2006. On-Line health search 2006. Pew Internet and American Life Project. Available at http://www.pewinternet.org/pdfs/PIP_Online_Health_2006.pdf Accessed: March 27, 2008. GeneCare Molecular Genetics, Ltd [1]. Cancer Multigene Nutrigenetic Test. Available at http://www.genecare.co.za/HealgenC.html Accessed: October 15, 2006.

GeneCare Molecular Genetics. Ltd [2]. Genetic tests to enhance diagnostic reliability: Ethics and informed consent. Available at http://www.genecare.co.za/other.html Accessed: October 15, 2006 Genelex Corporation [2]. About Genelex. Available at http://www.genelex.com/commonhtmls /aboutgen.html Accessed: October 15, 2006.

Genelex Corportation [1]. Nutritional genetics: Personalized nutritional and lifestyle recommendations from the genetic age. Available at http://www.healthanddna.com/ nutrigeneticstest.html Accessed: October 15, 2006.

Gene-Testing.com. FAQ’s: 8. Can Sciona tell me if I will develop a serious inherited illness, such as Huntington’s disease? Available at http://www.gene-testing.com/faq.php#8 Accessed: October 15, 2006

GeneWatchUK. Genetics and ‘Predictive Medicine’: Selling pills, ignoring causes. Briefing Number 18, May 2002. Available at http://www.quackwatch.org/01QuackeryRelatedTopics/ Tests/gpm.html Accessed: July 2, 2008.

GenovaDiagnostics [1]. Genovations™ profiles. Available at http://www.genovations.com/ home/profiles.html Accessed: October 15, 2006

GenovaDiagnostics [2]. Introducing breakthrough genetic assessment for customized intervention. Available at http://www.genovations.com/home/overview.html Accessed: October 15, 2006

GenovaDiagnostics [3]. Genovations™ predictive genomics for personalized medicine. Patients guide to genomics: Who can this test help? Available at http://www.genovations.com/

home/patient_overview.html Accessed: October 15, 2006

Geransar R, Einsiedel E. Evaluating online direct-to-consumer marketing of genetic tests: Informed choices or buyers beware? Genet Test 2008;12(1):13-23.

Goddard KAB, Moore C, Ottman D, Szegda KL, et al. Awareness and use of direct-to-consumer nutrigenomic tests, United States, 2006. Genet Med 2007;9(8):510-517.

Gollust SE, Wilfond SB, Hull SC. Direct-to-consumer sales of genetic services on the internet. Genet Med 2003;5(4):332-337.

Hirschhorn JN, Lohmueller K, Byrne E, Hirschhorn K. A comprehensive review of genetic association studies. Genet Med 2002;4(2):45-61.

Hudson K, Javitt G, Burke W, Byers P, et al. ASHG statement on direct-to-consumer genetic testing in the United States. Am J Hum Genet 2007;81:635-637.

Interleukin Genetics. Information for healthcare professionals: Interleukin-1 Heart Health Test. Available at http://www.ilgenetics.com/servlet/DownloadServlet.jsp?id=261 Accessed: October 15, 2006.

Janssens AC, Gwinn M, Bradley LA, Oostra BA, et al. A critical appraisal of the scientific basis of commercial genomic profiles used to assess health risks and personalize health interventions. The American Journal of Human Genetics 2008;82:593–599.

Javitt GH, Hudson K. Federal neglect: Regulation of genetic testing. Issues Sci Technol 2006;22(3):59-66.

Javitt GH. In search of a coherent framework: Options for FDA oversight of genetic tests. Food and Drug Law Journal 2007;62(4):617-652.

Kaput J, Dawson K. Complexity of type 2 diabetes mellitus data sets emerging from nutrigenomic research: a case for dimensionality reduction? Mutat Res 2007;622(1-2):19-32.

Kaput J, Ordovas JM, Ferguson L, et al. The case for strategic international alliances to harness nutritional genomics for public and personal health. Br J Nutr 2005;94:623-632.

Kaput J. Developing the promise of nutrigenomics through complete science and international collaborations. Forum of Nutr 2007;60:209-23.

Katsanis SH, Javitt G, Hudson K. A case study of personalized medicine. Science 2008;320(5872):53-54.

Kauwell GPA. Emerging concepts in nutrigenomics: A preview of what is to come. Nutr Clin Pract 2005;20(1):75-87.

Kember DW. Hi-Ethics: Tough principles for earning consumer trust. 2001. Available at http://hwinfo.healthwise.org/docs/DOCUMENT/3043.pdf Accessed: July 2, 2008.

Lampe JW. For Debate: Investment in nutrigenomics will advance the role of nutrition in public health. Cancer Epidemiology Biomarkers and Prevention 2006:15(12):2329-30.

Maglott D, Ostell J, Pruitt KD, Tatusova T. Entrez Gene: Gene-centered information at NCBI.Nucleic Acids Res 2005;33(Database issue):D54-8.

Martínez-González NA, Sudlow CL. Effects of apolipoprotein E genotype on outcome after ischaemic stroke, intracerebral haemorrhage and subarachnoid haemorrhage. J Neurol Neurosurg Psychiatry 2006;77(12):1329-35.

Muller M, Kersten S. Nutrigenomics: goals and strategies. Nat Rev Genet 2003;4:315-322. Mutch DM, Wahli W, Williamson G. Nutrigenomics and nutrigenetics: The emerging faces of nutrition. FASEB J 2005;19:1602-1616.

National Conference of State Legislatures. NCSLnet: Genetics legislation database. Available at http://www.ncsl.org/programs/health/genetics/geneticsDB.cfm Accessed: August 2, 2008.

National Society of Genetic Counselors (NSGC). Position statement: Direct to consumer genetic testing. Adopted 2007. Available at http://www.nsgc.org/about/position.cfm#DTC Accessed: July 4, 2008.

Opderbeck DW. How should FDA regulate prescription drug promotion on the Internet? Food and Drug Law Journal 1998;53;47-61.

Ordovas JM, Mooser V. Nutrigenomics and nutrigenetics. Curr Opin Lipidol 2004;15(2):101-108. PRNewswire. Interleukin Genetics enters into new clinical research collaboration with Alticor. February 28, 2008 Available at http://www.reuters.com/article/pressRelease/idUS151785+28-Feb- 2008+PRN20080228 Accessed: July 2, 2008.

Quixtar, Inc. Personalized health genetic tests: GENSONA Heart Health Genetic Test. Available at http://www.quixtar.com/products/product.aspx?pid= 7738&Ctg=13985& ItemNo=104009 Accessed: October 15, 2006.

Ribisl KM, Lee RE, Henriksen L, Haladjian HH. A content analysis of web sites promoting smoking culture and lifestyle. Health Educ Behav 2003;30(1):64-68.

Riffe D, Lacy S, Fico F. Analyzing media messages: Using quantitative content analysis in research. Mahwah, NJ: Lawrence Erlbaum Associates, Inc., 1998.

Rippen H, Risk A. e-Health code of ethics (May 24). J Med Internet Res 2000;2(2):e9. Available at http://www.jmir.org/2000/2/e9/ Accessed: July 2, 2008.

Sanoviv Medical Institute [1]. Personalized genetic testing: Introducing personalized genetic testing for your health. Available at http://www.sanoviv.com/departments/our_unique_

programs/personalized_genetic_ testing.html Accessed: October 15, 2006.

Sanoviv Medical Institute [2]. View Monica Lewis, MD describing the value of genetic testing. Available at http://www.sanoviv.com/en/testimonials/general/monica_lewis%2c_md_-

_%22sanoviv_offers_a_chance_to_turn_your_whole_life_around%22.html Accessed: October 15, 2006.

Sciona, Inc. Frequently asked questions. Available at http://www.sciona.com/ faqs.html Accessed: October 15, 2006.

Secretary’s Advisory Committee on Genetics, Health, and Society, 2006. Coverage and reimbursement of genetic tests and services. Available at http://www4.od.nih.gov/oba/ sacghs/reports/CR_report.pdf Accessed: April 2, 2008.

Simmons C. ‘Beware’ online DNA testing; GAO slams misleading sites. The Washington Times July 28, 2006:C10.

Stover PJ. Influence of human genetic variation on nutritional requirements. Am J Clin Nutr 2006;83(Suppl):436S–42S.

Sullivan D. Hitwise search engine ratings. Search Engine Watch. 2006. Available at http://searchenginewatch.com/showpage.html?page=3099931 Accessed: July 2, 2008

Suracell, Inc [1]. Our products. Available at http://www.suracell.com/shop/ index2.asp?storeID=223 Accessed: October 15, 2006.

Suracell, Inc [2]. FAQs: How can I be sure the results of my tests are accurate? Available at http://www.suracell.com/faqs/#38 Accessed: October 15, 2006.

The LabSafe Company [1]. How reliable are the results I receive? Available at http://www.lab- safe.com/faq/How-reliable-are-the-results-I-receive.html Accessed: October 15, 2006.

The LabSafe Company [2]. Lab Test: Reliable direct access lab tests put you in control. Available at http://www.lab-safe.com/why/ Accessed: October 15, 2006

TRUSTe®. Drive greater revenues by building consumers’ trust. Available at

http://www.truste.org/businesses/seal_programs_overview.php Accessed: July 2, 2008.

US Federal Trade Commission, 2006. At-home genetic tests: A healthy dose of skepticism may be the best prescription. Available at http://www.ftc.gov/bcp/edu/pubs/consumer/health/ hea02.shtm

Accessed: July 2, 2008.

US Government Accountability Office, 2006. Testimony before the Special Committee on Aging, US Senate. Available at http://www.gao.gov/cgi-bin/getrpt?GAO-06-977T Accessed: July 2, 2008. Wade N. Experts advise a grain of salt with mail-order genomes, at $1,000 a pop. NY Times, November 17, 2007;A16.

Wallace, H. Your diet tailored to your genes: Preventing diseases or misleading marketing? January 2006. Buxton, UK: Gene-Watch UK. Available at http://www.genewatch.org/uploads/

f03c6d66a9b354535738483c1c3d49e4/Nutrigenomics.pdf Accessed: July 2, 2008.

Williams-Jones, B. Where there’s a web, there’s a way: Commercial genetic testing and the internet. Community Genet 2003;6(1):46–57.

Winker MA, Flanagin A, Chi-Lum B, White J, et al. Guidelines for medical and health information sites on the internet: Principles governing AMA websites. JAMA 2000;283(12):1600-1606.

World Health Organization, 2007. International statistical classification of diseases and related health problems, 10th Revision, Version for 2007. Available at http://www.who.int/

Figure 3.1. Pilot study to select search terms to identify websites promoting or selling nutrigenomic services

Search Terms Pilot-Tested in Google (n=25)

Nutragenetic test, Nutragenetic testing, Nutragenomic test, Nutragenomic testing Nutrigenetic test, Nutrigenetic testing, Nutrigenomic test, Nutrigenomic testing Nutrition DNA scan, Nutrition DNA test, Nutrition DNA testing

Nutrition genetic scan, Nutrition genetic test, Nutrition genetic testing Nutrition genome scan, Nutrition genome test, Nutrition genome testing Nutrition profile DNA, Nutrition profile genetic, Nutrition profile genomic Nutritional gene test, Nutritional genetic test, Nutritional genetic profile Nutritional genetic testing, Nutritional genomic profile

Minimum Number of Pilot-Tested Search Terms Needed to Capture all Relevant Websites (n=9) Nutragenetic testing, Nutrigenetic testing

Nutrigenomic testing Nutrition DNA test Nutrition genome testing

Nutrition profile DNA, Nutrition profile genetic, Nutrition profile genomic, Nutritional genomic profile New Search Terms Appearing as

Metatags on Relevant Websites (n=11) Genetic diet, DNA diet

Diet test, Diet testing Nutrition genetic analysis Nutrition genomic analysis Genetic assessment

Lab test genomic, Lab test genetic DNA testing kit, Personalized testing

26 Relevant Websites Identified

20 Search Terms Selected for Comprehensive Search

Figure 3.2. Comprehensive search results for websites promoting and selling nutrigenomic services and website selection, October 2006

a

Excludes 16 URLs whose primary webpage content could not be determined. All values include duplicate URLs, excluding values presented in shaded boxes.

Google, Yahoo, MSN Search Results Using 20 Search Terms

N=2135 URLs a Health Product Promoted/Sold N=643 URLs (29.9%) Genetic Product Promoted/Sold N=551 URLs (25.6%)

Nutrigenomic Product Promoted/Sold N=275 URLs (12.8%)

Nutrigenomic Test 168 (61.1%) Nutrigenomic, HG and SG 78 (28.4%) Nutrigenomic and HG 29 (10.5%)

No Health Product or Service Promoted/Sold N=1492 URLs

News/Editorial/Press Release 257 (17.2%) Education/Advocacy 234 (15.7%) Org Info/Staff Profiles/Activities 344 (12.5%) Directory/Listing/Search Results 187 (12.5%) White Paper/Presentation 184 (12.3%) Opinion/Talk/Blog 126 (9.8%) Peer Reviewed Paper 132 (8.8%)

Other 8 (0.5%)

No Genetic Product Promoted/Sold N=92 URLs

Supplement, Tonic, Tea 54 (69.2%) Diagnostic Test 34 (30.8%) Diagnostic Test and Supplement 10 (12.8%)

Other 4 (5.1%)

No Nutrigenomic Product Promoted/Sold N=276 URLs

Social-Related Genetic Test (SG) 189 (68.5%) Health-Related Genetic Test (HG) 52 (18.8%) Other Genetic Product or Service 25 (9.1%) Social and (Health or Other) 10 (3.6%)

1 URL not in search results promoting nutrigenomic test listed on

Directory/Listing 76 Unique URLs

8 links to URLs with additional information

2 Shopping Comparison Websites

82 Unique Websites (Domain Names)

6

8

Table 3.1. Select organization and service characteristics mentioned on websites promoting nutrigenomic services (NG) by host organization type, October 2006 (N=64)

Select Characteristics Mentioned On Website

Organization (Org) Services

Domain Names Appearing In Comprehensive URL Search (n=74) and Affiliated Domains [ad] Not in

URL Search (n=8) Off-Shore Location Only (n=10) Affiliation/ Distribution Opportunity (n=15) Promoted by Other Org in Search (n=17) At-Home NG Testing (n=28) NG Supple- ments (n=20) On-Line Payment for NG Services (n=26) Health- Related Genetic Testing (n=17) Social- Related Genetic Testing (n=7) Biotechnology Company, Laboratory, Testing Facility (n=17)

CyGeneDirect™

http://www.cygenelabs.com

https://cygenedirect.com/default.html [ad]

Yes Yes Yes Yes

DaVinci Laboratories of Vermont

http://www.davincilabs.com Yes Yes Yes

DDS DNA Test Express

http://www.ddstest.com/dnatestx/index.html Yes Yes Yes

Determigene

http://www.determigene.com/ Yes Yes Yes

GeneCare Molecular Genetics (Pty) Ltd

http://www.genecare.co.za/index2.html Yes Yes Yes

Genelex Corporation http://www.genelex.com http://www.healthanddna.com

Yes Yes Yes Yes Yes Yes

GeneLink, Inc.

http://www.bankdna.com http://www.genelink.info

Yes Genetic Health

http://www.genetic-health.co.uk Yes Yes Yes

GENOSENSE Diagnostics

6

9

Domain Names Appearing In Comprehensive URL Search (n=74) and Affiliated Domains [ad] Not in

URL Search (n=8) Off-Shore Location Only (n=10) Affiliation/ Distribution Opportunity (n=15) Promoted by Other Org in Search (n=17) At-Home NG Testing (n=28) NG Supple- ments (n=20) On-Line Payment for NG Services (n=26) Health- Related Genetic Testing (n=17) Social- Related Genetic Testing (n=7) GenovaDiagnostics® http://www.gdx.net/home http://www.genovations.com http://www.gsdl.com [ad] Yes Yes Interleukin Genetics

http://www.ilgenetics.com/index.jsp Yes Yes Yes a Yes a Yes

Nutrigen http://www.1-888-nutrigen.com/index.html http://www.thecyclingdiet.com [ad] OnePersonHealth http://www.onepersonhealth.com/geneticAnalysis/n utritional Genetics.jsp http://www.onepersongenetics.com

Yes Yes Yes Yes Yes

Sciona™, Inc.

http://www.sciona.com http://www.mycellf.com [ad]

Yes Yes Yes

Suracell, Inc.

http://www.suracell.com Yes Yes Yes Yes Yes

The DNA Testing Centers

http://thednatestingcenters.com/mainpage.html Yes Yes

The LabSafe Company

http://www.lab-safe.com Yes Yes Yes Yes

Health and Wellness Care Providers (n=21) Biamonte Center for Clinical Nutrition

7

0

Domain Names Appearing In Comprehensive URL Search (n=74) and Affiliated Domains [ad] Not in

URL Search (n=8) Off-Shore Location Only (n=10) Affiliation/ Distribution Opportunity (n=15) Promoted by Other Org in Search (n=17) At-Home NG Testing (n=28) NG Supple- ments (n=20) On-Line Payment for NG Services (n=26) Health- Related Genetic Testing (n=17) Social- Related Genetic Testing (n=7) Carolyn Katzin, CNS--Cancer Nutrition Center,

The DNA Diet

http://www.carolynkatzin.com http://www.cancernutrition.com http://www.thednadiet.com

Yes Yes Yes

Complete Health

http://www.completehealthinstitute.com Complete Nutrition and Wellness

http://www.completenutritionandwellness.com/inde x.html Yes Yes Dawn A. Lancaster, DC http://www.wsmcafe.com/new_users/0/3/03100241j p8/ index.html http://www.davincicon.com/Merchant2/agentgo.mv ?AG=DrDawn&SC=SFNT&S=D&RU=http://www .davincicon.com/welaffiliate.html [ad] Yes a Yes b

Holistic Naturopathic Center

http://www.holisticnaturopath.com/index.htm Integrative Health Solutions

http://www.docbron.com Yes

Jacquie Carboni, NMD

http://www.netsupport.com/drjacquie/index2.htm Yes Yes

Jim Otis, DC, DACNB

http://www.jimotisdc.com/index.html Yes a Yes a

Kristy McKendrix, ND--Healing with Health, nutraMetrix™

http://www.thewebitect.com/hwhindex.html http://drkristy.nutrametrix.com [ad]

7

1

Domain Names Appearing In Comprehensive URL Search (n=74) and Affiliated Domains [ad] Not in

URL Search (n=8) Off-Shore Location Only (n=10) Affiliation/ Distribution Opportunity (n=15) Promoted by Other Org in Search (n=17) At-Home NG Testing (n=28) NG Supple- ments (n=20) On-Line Payment for NG Services (n=26) Health- Related Genetic Testing (n=17) Social- Related Genetic Testing (n=7) Mommy & Me Chiropractic, Ltd.

http://www.mommynmeonline.com

http://www.davincicon.com/Merchant2/agentgo.mv ?AG=DrBrooks&SC=SFNT&S=D&RU=http://ww w.davincicon.com/welaffiliate.html [ad]

Yes a Yes b

Natural Family Health Care Center of the Shoreline http://www.naturalfamilyhealthct.com

Natural Health California

http://www.naturalhealthcalifornia.com Naturopathic Clinic of Concord http://www.pamelaherring.com Nicola McFadzean

http://www.drnicola.com/201/index.html Nutrition In Motion

http://www.nimdiet.com/healthandlongevity.php Yes Yes Yes

Neurological Research Institute

http://www.holistichealth.com/Welcome.html http://www.autismanswer.com

http://www.holisticheal.com http://www.testing4health.com

Yes Yes Yes

Rebecca Muttart, ND

http://www.docrebecca.com/about.html Yes SOMA Acupuncture & Natural Health Clinic

http://www.somaacupuncture.com The Maas Clinic

http://www.themaasclinic.com/index.html Yes Time to Unwind Therapeutic Massage, Inc.

7

2

Domain Names Appearing In Comprehensive URL Search (n=74) and Affiliated Domains [ad] Not in

URL Search (n=8) Off-Shore Location Only (n=10) Affiliation/ Distribution Opportunity (n=15) Promoted by Other Org in Search (n=17) At-Home NG Testing (n=28) NG Supple- ments (n=20) On-Line Payment for NG Services (n=26) Health- Related Genetic Testing (n=17) Social- Related Genetic Testing (n=7) Health and Wellness Care Providers with Medical Doctor (MD) (n=11)

Alternative Medicine & Healthcare

http://alternativemedicinehealthcare.com/index.htm Breakspear Medical Group

http://www.breakspearmedical.com/index.html Yes Cedars-Sinai GenRISK Adult Genetics Program

http://www.cedars-sinai.edu http://www.csmc.edu/951.html

Yes Elan Vital Medical Centers and Spas

http://www.spadocs.com

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