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Annex 2: Electronic health records – examples of service providers



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Annex 2: Electronic health records – examples of service providers


Third-party controlled records

Google Health109 and Microsoft HealthVault Records110 are examples of online records services controlled by third parties. Google Health, which only offers full functionality for users within the USA,111 aims to: “store and manage all of your health information in one central place”, with the ability to “access your information anywhere, at any time”. The advantage that is claimed for such services is that they enable individuals to build up a comprehensive personal health profile that can keep their doctors up-to-date; avoid repetitive paperwork and lab tests; ensure that medical records are not lost; and put individuals in control of their own health data.112 Individual control of data is emphasised: “you are in control”, “you manage your health information” and “your health information belongs to you”.113 Microsoft HealthVault is a similar system, although only users in the USA can sign up for the service. Microsoft claims that “HealthVault offers you a way to store health information from many sources in one location, so that it’s always organised and available to you online”.114



Health-service controlled records

The NHS Care Records Service115 which, within the UK, has so far only been introduced in England on a trial basis, enables individuals’ health data to be “shared between different clinicians, organisations and tiers of care”,116 in a variety of different forms. Records range from those designed to contain only basic demographic information to those containing extremely detailed clinical patient information intended to be shared across local health providers.117 The House of Commons Health Committee has suggested that the system will give patients “more control of their own healthcare.”118


Annex 3: Body imaging – how it works


CT scans use special X-ray equipment to gather image data from different angles around the body. Digital processing of this information produces cross-sectional images of body tissues and organs in either two- or three-dimensions.119
MRI is defined by the American National Institutes of Health as “…a non-invasive test that creates detailed images of your organs and tissues”.120 MRI scans work by detecting the body’s response to strong magnetic fields. Similarly to CT scans, computers are then used to construct visual images from the information gathered by the scan.121


Annex 4: Body imaging – example service providers122


Company


Types of service

Risk information

Marketing

Example costs

European Scanning
www.europeanscanning.com

Electron beam CT scan.

MRI.


Ultrasound.

Indirect mention of radiation risk, in context of statement that EBCT offers lowest risk.

“We all know that prevention is better than cure.”

Not provided.

Lifescan
www.lifescanuk.org

Range of CT scans.

Virtual colonoscopy.

Heart and lung scan.

Bone density scan.



Some information on risks given on website.

“Spring is the time to give yourself an MOT with Lifescan”,

“Check you’re as well as you feel.”



£110 (Bone density scan) - £825 (Life Scan plus virtual colonoscopy).

Preventicum
www.preventicum.co.uk

MRI scan of whole body.

MRI of arteries, brain, colon, heart.



Risks of radiation and false positives given and debate surrounding clinical use of CT scans acknowledged.

“The most advanced and safest full body check-ups in the UK.”


£2,150 (Preventicum Ultimate MRI) - £2,475 (Preventicum Ultimate Plus MRI.)

Prescan
www.prescan.co.uk

MRI and CT scan of whole body.

Some discussion of risks, false positives and false negatives.

“Prescan's Total Body Scan is rated with a 9 by Dr Thomas Stuttaford from The Times!”

£440 (MRI scan per body part) - £1,290 (Total Body Scan MRI and CT).

Annex 5: DNA profiling – example service providers123


Company

Type of service

Detail

Risk information

Marketing

Cost

Knome
www.knome.com

(online only)



Full genome sequencing.

“Although more resource-intensive, we use whole-genome sequence information as the basis of our analyses, instead of the SNP genotyping”.

Provides “comprehensive analysis [of sequence] from a team of leading geneticists, clinicians and bioinformaticians.”

“Once your entire genome has been sequenced, you will be able to stay current on future genetic discoveries as they become available.”

Prices quoted as varying between individual customers.

23andMe
www.23andme.com

(online only)



DNA variant profiling to provide: risks of various diseases and traits; and information about ancestry and family inheritance.

Around 550,000 DNA variants profiled. Raw data and analysis provided through personal online account. Information can be shared with linked friends and family (or others) by mutual agreement.

Provides access to raw data, and information on risk of disease based on genetic profile, ethnicity and age. Risks provided as numerical and pictorial representation of odds ratios, and average odds ratio for someone of the same ethnicity and age.

“Genetics just got personal.”

USD399 (£268).

Genetic Health
www.genetic-health.co.uk

(and London location)



Various packages offered, each using DNA variants to check for genes associated with particular ranges of diseases/traits.

Each package genotypes different DNA variants.

Before and after the test, clients receive a consultation with a doctor either by telephone or face-to-face.

“We can advise you how to create your own individual plan for cardiac disease prevention based on your results” [for cardiac test].

£180 (Pharmaco Gene)-£825 (Premium Male or Female).

Annex 6: Information provided by private DNA profiling services


The information provided by DNA profiling companies has been investigated both journalistically and academically. In one newspaper article,124 a journalist approached several companies including: GeneticHealth (a UK firm), deCODEme (based in Iceland) and 23andMe (an American organisation), in order to compare their test results.
There was considerable variation in the way in which information was provided, and specific risk predictions also differed considerably. For example, deCODEme stated that the risk of developing exfoliation glaucoma for the individual being profiled was 91 per cent below average, while 23andMe claimed the risk was 3.6 times more likely than average. In the case of heart problems, deCODEme quoted a risk of a heart attack, angina or sudden cardiac death at 54.8 per cent, or 6 per cent above average, while 23andMe claimed the risk of a heart attack between the ages of 45 and 84 for the individual concerned was 17.5 per cent below average.
In early 2008 a scientific review of tests offered by seven companies was published. The review assessed the evidence supporting the purported associations between genes and diseases. It concluded that the increased disease risk associated with the genes that the companies tested for had either not been sufficiently investigated or were “minimal to not significant”. In addition, the review warned that “those with ‘low-risk’ profiles could be led to mistakenly believe that they have little need to make health lifestyle changes.”125

Annex 7: Regulation of DNA profiling and body imaging services

DNA testing

In the UK, medical DNA tests are governed by the European Union In Vitro Diagnostic Devices (IVDD) Directive.126 The Medicines and Healthcare products Regulatory Agency (MHRA) ensures compliance.127


The IVDD Directive applies only to devices for medical purposes.128 The majority of DNA tests are currently placed in ’Category 1’, the low risk category. Tests for phenylketonuria, HLA tissue type and Down’s syndrome are classed as high risk, although no new genetic tests have been added to the high risk category since the publication of the Directive in 1998. For low risk tests, the HGC’s report, More Genes Direct, notes that ”no independent evaluation of manufacturers’ claims is required”,129 i.e. no regulatory approval is required prior to the test being placed on the market.
The exact scope of the term ‘medical’ in this context is not clear. The MHRA has indicated that ‘lifestyle’ tests, for example a test that purports to explain how well a person’s metabolism deals with alcohol,130 are not medical in nature.
The marketing and advertising of genetic tests in the UK is regulated by a number of bodies, including the Advertising Standards Agency (ASA), the Office of Fair Trading (OFT) and the Office of Communications (Ofcom).
The ASA administers the British Advertising Codes. These codes are the responsibility of an industry body, the Committee of Advertising Practice, but are independently administered by the ASA.131 The ASA requires that an advertisement be “capable of objective substantiation”, and not be misleading.132 The ASA only responds to complaints, and does not generally carry out investigations on its own initiative. There are a variety of sanctions available, including preventing the advertiser from continuing to use the advert in question, publishing the decision on the ASA website or referring the publisher of the advert to Ofcom or the advertiser to the OFT.133 Where a complaint concerns a device such a genetic test, both the ASA and the OFT have stated that they would be likely to consult with the MHRA for further advice.134
In terms of internet advertising, the ASA is restricted to considering advertisements in ‘paid’ space (i.e. those search results that appear as a result of the company in question paying the search engine provider) and not any claims made on their own websites. In those cases, the issue is the responsibility of the local Trading Standards Office.
Body imaging

The Ionising Radiation (Medical Exposure) Regulations 2000 require that all individual medical radiation exposures (such as from a CT scan) must provide sufficient benefit to offset any harm done, and exposures should be kept as low as reasonably practical.


However, there is no general regulatory framework applicable to private providers of body imaging services, in the same way that the National Screening Committee (NSC) regulates the public sector in the UK, although it has been suggested that this would be desirable.135
A government advisory panel published in 2007 a report into the impact of personally initiated CT scanning for the health assessment of asymptomatic individuals. The panel, the Committee on Medical Aspects of Radiation in the Environment, reports that there is insufficient evidence to justify the use of medical exposure for ‘whole body scans’, and recommends that “services offering whole body CT scanning of asymptomatic individuals should stop doing so immediately”, while those that offer scans for regions of the body should in the advertising “clearly state which regions are examined and for which conditions the scan is optimised”.136


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14 Henderson M (2009) Genetic mapping of babies by 2019 will transform preventive medicine. The Times. 9th February 2009.


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17 Gartner CE, Barendregt JJ, Hall WD (2009) Multiple genetic tests for susceptibility to smoking do not outperform simple family history. Addiction, 104, 118-126.

18 Janssens ACJW, van Duijn CM (2008) Genome-based prediction of common diseases: advances and prospects. Human Molecular Genetics, 17(R2), R166-R173.

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20 Wilkie A (2006) Polygenic inheritance and genetic susceptibility screening. Encyclopedia of Life Sciences. DOI: 10.1002/9780470015902.a0005638.

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23 Wallace HM (2006). Your diet tailored to your genes: preventing diseases or misleading marketing? GeneWatch UK. http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/Nutrigenomics.pdf

24 GeneWatch UK (2009) Is ‘early health’ good health? http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/Data_mining_brief_fin_3.doc

25 Hall, W, Madden, P, Lynskey, M. The Genetics of Tobacco Use: Methods, Findings and Policy Implications. Tob Con 2002; 11: 119-124.

26 Wallace HM (2006) A model of gene-gene and gene-environment interactions and its implications for targeting environmental interventions by genotype. Theoretical Biology and Medical Modelling, 3 (35), doi:10.1186/1742-4682-3-35. http://www.tbiomed.com/content/3/1/35

27 Wallace HM (forthcoming) Big Tobacco and the human genome: driving the scientific bandwagon? Submitted to Genomics, Society and Policy.

28 Proctor RN. 1995. Cancer wars: How politics shapes what we do and don’t know about cancer. Basic Books, New York. p.243.

29 House of Commons Health Committee (2009) Health Inequalities. Third Report of Session 2008-09. Volume I. 26th February 2009. http://www.publications.parliament.uk/pa/cm200809/cmselect/cmhealth/286/286.pdf

30 Food Ethics Council (2005) Genetic personal: shifting responsibilities for dietary health. December 2005. London, Food Ethics Council.

31 http://www.foresight.gov.uk/OurWork/ActiveProjects/Obesity/Obesity.asp

32 Rose, G (1985), Sick individuals and sick populations, International Journal of Epidemiology, 14 (1), 32-38.

33 See: https://www.google.com/health/.

34 See: http://www.healthvault.com/Personal/index.html.

35 House of Commons Health Select Committee (2007) The Electronic Patient Record – Sixth Report of Session 2006-2007 (London: The Stationery Office) p.3.

36 Getting personal: the promise of cheap genome sequencing. The Economist. 16th April 2009. http://www.economist.com/specialreports/displaystory.cfm?story_id=13437974

37 The benefits, and potential side-effects, of sharing medical records on-line. Knowledge@Wharton. 28th November 2007. http://knowledge.wharton.upenn.edu/printer_friendly.cfm?articleid=1846

38 Wallace HM (2009) Genetic screening for susceptibility to disease. Encyclopedia of Life Sciences. In press.

39 WHO(2008) Closing the gap in a generation. Commission on Social Determinants of Health. http://whqlibdoc.who.int/publications/2008/9789241563703_eng.pdf

40 http://www.who.int/mediacentre/news/releases/2008/pr29/en/index.html

41 Weldon S, Levitt M (2004) Public databases and privat(ized) property. In Arnason,G., Nordal, S. and Arnason, V. (Eds.) Blood and Data: ethical, legal and social aspects of human genetic databases. University of Iceland; Reykjavik.

42 Levitt M, Weldon S (2005) Public perceptions of the governance of DNA databases. Critical Public Health, 15(4), 311-321.

43 Royal Society (2003) Genetic Testing – Which Way Forward? Royal Society National Forum for Science 2003. Report of a Meeting at Church House, Westminster, London, March 4, 2003.

44 CfH (2008) Consultation on the wider use of patient information. http://www.connectingforhealth.nhs.uk/systemsandservices/research/consultation

45 House of Lords Science and Technology Committee (2009) Genomic Medicine. Volume I. 2nd Report of Session 2008-09. http://www.publications.parliament.uk/pa/ld200809/ldselect/ldsctech/107/107i.pdf

46 Lohr S (2009) A push for the wired patient’s bill of rights. New York Times Blogs. 22nd June 2009. http://bits.blogs.nytimes.com/2009/06/22/a-push-for-the-wired-patients-bill-of-rights/

47 http://www.advisorybodies.doh.gov.uk/hitf/mmtsg.htm

48 http://www.hm-treasury.gov.uk/cooksey_review_index.htm

49 http://www.ournhs.nhs.uk/

50 External Reference Group. http://www.connectingforhealth.nhs.uk/systemsandservices/research/external

51 MRC(2007) The use of personal health information in medical research. MRC/Ipsos MORI. 26 June 2007. http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC003810

52 Armstrong V, Barnett J, Cooper H, Monkman M, Moran-Ellis J, Shepherd R (2007) Public attitudes to research governance: A qualitative study in a deliberative context. Wellcome Trust. http://www.wellcome.ac.uk/stellent/groups/corporatesite/@policy_communications/documents/web_document/wtx038443.pdf

53 Kaye J (2006) Police collection and access to DNA samples. Genomics, Society and policy, 2(1), 16-27. http://www.gspjournal.com

54 See: http://www.webmd.com.

55 See: http://askdrwiki.com.

56 See: http://www.nhsdirect.nhs.uk/help/index.aspx.

57 BBC News (2004) Internet pharmacies get go-ahead, available at: http://news.bbc.co.uk/1/hi/health/3572620.stm.

58 FDA (2007) FDA Warns Consumers about Counterfeit Drugs from Multiple Internet Sellers, available at: http://www.fda.gov/bbs/topics/news/2007/new01623.html.

59 J Zarocostas (2009) Abuse of prescription drugs is second only to abuse of cannabis in US, UN drugs panel says BMJ 2009;338:b684.

60 See, for example, European Commission (2008) Pharmaceutical Sector Inquiry – Preliminary Report, available at: http://ec.europa.eu/competition/sectors/pharmaceuticals/inquiry/preliminary_report.pdf.

61 Directive 2001/83/EC on the Community code relating to medicinal products for human use, as amended.

62 http://ec.europa.eu/enterprise/pharmaceuticals/patients/respons_publ_consult_200805/consumer/consumers_international.pdf

63 Department of Health (2005) Building Telecare in England (London: Department of Health), p.9.

64 See: http://genepartner.com/.

65 See: http://www.atlasgene.com/.

66 Furness P, Zimmern R, Wright C and Adams M (2008) The Evaluation of Diagnostic Laboratory Tests and Complex Biomarkers (London and Cambridge: Royal College of Pathologists and PHG Foundation), available at: www.phgfoundation.org/file/3998/.

67 Human Genetics Commission (2003) Genes Direct, available at: http://www.hgc.gov.uk/UploadDocs/DocPub/Document/genesdirect_full.pdf.

68 Human Genetics Commission (2007) More Genes Direct, available at: http://www.hgc.gov.uk/UploadDocs/DocPub/Document/More%20Genes%20Direct.pdf.

69 I.e. the requirement that such profiling should be shown to have benefits to the individual and be cost-effective.

70 Wald NJ (2007) Screening: a step too far. A matter of concern J Med Screen 14: 163–4.

71 Salman RA-S, Whiteley WN and Warlow C (2007) Screening using whole-body magnetic resonance imaging scanning: who wants an incidentaloma? J Med Screen 14: 2–4.

72 See: http://www.hgc.gov.uk/Client/Content.asp?ContentId=816.

73 Hirschorn JN (2009) Genome Wide Association studies – illuminating biological pathways. New England Journal of Medicine, 360, 1699-1701.

74 Fleming N (2008) Rival genetic tests leave buyers confused. Sunday Times, 7th September 2008. http://www.timesonline.co.uk/tol/news/uk/science/article4692891.ece

75 Goldstein D (2009) Common genetic variation and human traits. New England Journal of Medicine, 360, 1696-1698.

76 Kraft P, Hunter DJ (2009) Genetic risk prediction – are we there yet? New England Journal of Medicine, 360, 1701-1703.

77 Maher B (2008) The case of the missing heritability. Nature, 456 (6), 18-21.

78 Wade N (2009) Genes show limited value in predicting diseases. New York Times. 15th April 2009. http://www.nytimes.com/2009/04/16/health/research/16gene.html?_r=2&ref=global-home

79 Rose SPR (2006) Heritability estimates – long past their sell-by date. International Journal of Epidemiology, 35, 525-527. http://ije.oxfordjournals.org/cgi/reprint/35/3/525

80 Janssens ACJW, Gwinn M, Bradley LA, Oostra BA, van Duijn CM, Khoury MJ (2008) 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 82, 593–599. http://www.ajhg.org/AJHG/fulltext/S0002-9297(08)00145-6.

81 GeneWatch UK evidence to the MHRA regarding genetic tests sold by the UK company Genetic Health. August 2007. http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/MHRA_GWevidence_fin.doc

82 http://www.bshg.org.uk/GeneticHealthresponseITV1107.pdf

83 http://www.bshg.org.uk/documents/other_docs/genetic%20testing%20coverage.doc

84 Randerson J (2009) The day I had my genes tested. The Guardian. 9th December 2008. http://www.guardian.co.uk/lifeandstyle/2008/dec/09/healthandwellbeing-medicalresearch

85 GeneWatch UK response to the MHRA consultation “Challenges and priorities for the next five years”. October 2007. http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/MHRA07_1.doc

86 http://www.gao.gov/docsearch/abstract.php?rptno=GAO-06-977T .

87 McKie R (2008) Internet gene tests provoke alarm. The Observer. 3rd February 2008. http://www.guardian.co.uk/science/2008/feb/03/genetics.mentalhealth

88 'Commercial Genetic Psychiatric Tests Are Irresponsible And Harmful, Say Scientists'. Medical News Today. 17th April 2009. http://www.medicalnewstoday.com/articles/146364.php

89 Cookson C (2009) Schizophrenia genetically linked to other disorders. The Financial Times. 2nd July 2009. http://www.ft.com/cms/s/0/dce921c8-669f-11de-a034-00144feabdc0.html

90 https://www.23andme.com/health/pre_schizophrenia/

91 Marteau TM, Weinman, J (2005) Self-regulation and the behavioural response to DNA risk information: A theoretical analysis and framework for future research. Social Science & Medicine, 62 (6),1360-1368.

92 Unal B, Critchley JA, Capewell S (2005) Modelling the decline in coronary heart disease death in England and Wales, 1981-2000: comparing contributions from primary prevention and secondary prevention. British Medical Journal, 331, 614-619.

93 Diabetes Prevention Program Research Group (2002) Reduction in the incidence of type 2 diabetes with lifestyle intervention or metformin. The New England Journal of Medicine, 346(6), 393-403.

94 Hofker M, Wijmenga C (2009) A supersized list of obesity genes. Nature Genetics, 41, 139-140.

95 Johnson L, van Jaarsveld CHM, Emmett PM, Rogers IS, Ness AR, Hattersley AT, Timpson NJ, Davey Smith G, Jebb SA (2009) Dietary Energy Density Affects Fat Mass in Early Adolescence and Is Not Modified by FTO Variants. PLoS One. 4(3): e4594. doi:10.1371/journal.pone.0004594


96 Meigs JB, Shrader P, Sullivan LM, McAteer JB, Fox CS, Dupuis J, Manning AK, Florez JC, Wilson PWF, D’Agostino RB, Cupples LA (2008) Genotype score in addition to common risk factors for prediction of Type 2 Diabetes. New England Journal of Medicine, 359, 2208-2219.

97 SACN (2008) SACN statement on genetic testing. October 2008. http://www.sacn.gov.uk/pdfs/sacn_statement_on_genetic_testing_oct08_final.pdf

98 Kraft P(2008) Curses – winner’s and otherwise – in genetic epidemiology. Epidemiology, 19(5), 649-651.

99 Borry P, Howard HC, Sénécal K, Avard D (2009) Direct-to-consumer genome scanning services. Also for children? Nature Genetics, 10, 8.

100 Singh I, Rose N (2009) Biomarkers in psychiatry. Nature, 460, 202-207.

101 Council of Europe (2008) Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Genetic Testing for Health Purposes. Brussels, Belgium, 2008. Available on: http://conventions.coe.int/Treaty/EN/Treaties/Html/TestGen.htm

102 Wallace HM (2008b) Most gene test sales are misleading. Nature Biotechnology, 26(11), 1221.

103 GeneWatch UK (2008) Response to the consultation on the Medical Devices Directives. Available on: http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/MedDevDir_GW.doc

104 Hogarth S, Melzer D (2007) The IVD Directive and genetic testing: problems and proposals. A briefing presented to the 20th meeting of Competent Authorities. Lisbon, July 2007.

http://www.eshg.org/documents/BriefingIVDDirectiveFINAL_july_20071.pdf



105 http://www.cdc.gov/genomics/gtesting/ACCE.htm

106 AHRQ(2009) Outcomes of genetic testing in adults with a history of venous thromboembolism. Evidence Report/Technology Assessment. Number 180. http://www.ahrq.gov/clinic/tp/fvltp.htm

107 OECD (2007) OECD Guidelines for Quality Assurance in Molecular Genetic Testing. http://www.oecd.org/dataoecd/43/6/38839788.pdf

108 GeneWatch UK (2008) Submission to the House of Lords Science and Technology Committee’s Genomic Medicine Inquiry. http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/Genomic_med_GW_fin.doc

109 See: https://www.google.com/health/.

110 See: http://www.healthvault.com/Personal/index.html.

111 Such as importing pre-existing electronic health records.

112 Google (2008) About Google Health, available at: http://www.google.com/intl/en-GB/health/about/.

113 Ibid.

114 Microsoft (2008) What HealthVault can do for you, available at: http://healthvault.com/personal/websites-overview.html.

115 See: http://www.nhscarerecords.nhs.uk/.

116 House of Commons Health Select Committee (2007) The Electronic Patient Record – Sixth Report of Session 2006-2007 (London: The Stationery Office) p.18.

117 Ibid., pp.18-19.

118 Ibid., p.3.

119 Committee on Medical Aspects of Radiation in the Environment (COMARE) (2007) Twelfth ReportThe impact of personally initiated X-ray computed tomography scanning for the health assessment of asymptomatic individuals (Didcot: Health Protection Agency), p.7, available at: http://www.comare.org.uk/documents/COMARE12thReport.pdf.

120 National Institutes of Health (2007) What is Cardiac MRI?, available at: http://www.nhlbi.nih.gov/health/dci/Diseases/mri/mri_whatis.html.

121 J Walton, JA Barondess and S Lock (Editors) (1994) The Oxford Medical Companion (Oxford University Press: New York) p.477.

122 As of April 2009. Note that the information summarised here is not intended to provide an exhaustive description. Prices cited here aim to reflect the range of relevant services available and are not comparable. For further information please see the relevant company’s websites.

123 As of April 2009. Note that the information summarised here is not intended to provide an exhaustive description. Prices cited here aim to reflect the range of relevant services available and are not comparable. For further information please see the relevant company’s websites.

124 Flemming N (2008) Rival genetic tests leave buyers confused The Times 07 September.

125 Janssens ACJW, Gwinn M, Bradley LA, Oostra BA, van Diujn CM and Khoury MJ (2008) A critical appraisal of the scientific basis of commercial genomic profiles used to assess health risks and personalise health interventions Am J Hum Gen 82: 593–9.

126 Directive 98/79/EC.

127 Human Genetics Commission (2007) More Genes Direct, p.11.

128 Articles 1 and 2(a) Directive 98/79/EC.

129 Human Genetics Commission (2007) More Genes Direct, p.16.

130 Human Genetics Commission (2003) Genes Direct, p.23.

131 The codes can be read in full at http://www.cap.org.uk/cap/codes/.

132 Advertising Standards Authority Advertising Under Control, available at: http://www.asa.org.uk/asa/about/control/.

133 Ibid.

134 Human Genetics Commission (2007) More Genes Direct, p.13.

135 Wald NJ (2007) Screening: a step too far. A matter of concern J Med Screen 14: 163–4; Sense About Science (2008) Making sense of testing (London: Sense About Science).

136 Committee on Medical Aspects of Radiation in the Environment (COMARE) (2007) Twelfth ReportThe impact of personally initiated X-ray computed tomography scanning for the health assessment of asymptomatic individuals (Didcot: Health Protection Agency), pp.1–83, p.52.





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