Informed Consent and Multiplex Genetic Screening
Published Online: 15 JAN 2010
Copyright © 2001 John Wiley & Sons, Ltd. All rights reserved.
How to Cite
Avard, D. and Harmsen, E. 2010. Informed Consent and Multiplex Genetic Screening. eLS. .
- Published Online: 15 JAN 2010
- Advisory Committee on Genetic Testing (1998) Advice to research ethics committee: points to consider in ethical review of medical research involving genetic testing. http://cellbank.nibio.go.jp/information/ethics/documents/recrev3uk.pdf
- American Medical Association (1998) Multiplex genetic testing. Hastings Center Report 28: 15–21.
- 1994) Assessing Genetic Risks: Implications for Health and Social Policy. Washington DC: National Academy Press. , , and (
- 2008) Ethical, legal, and social concerns about expanded newborn screening: fragile X syndrome as a prototype for emerging issues. Pediatrics 121: e693–e704. , , et al. (
- 2005) Genetic testing of embryos: a critical need for data. Reproductive Biomedicine Online 11: 667–670. , , et al. (
- 2008) Preimplantation genetic screening: a survey of in vitro fertilization clinics. Genetic Medicine 10: 685–690. , and (
- 2004) Improving population health or the population itself? Health technology assessment and our genetic future. International Journal of Technology Assessment in Health Care 20: 106–114. , , et al. (
- 2005) Public culture and public understanding of genetics: a focus group study. Public Understanding of Science 14: 47–65. (
- Ethical Committee of Pordenone Hospital et al. (2007) Epidemiological and ethical aspects of multiplex autoantibody testing. Autoimmunity Reviews 6: 354–358. , ,
- 2008) Direct to consumer genetic services: a look across the pond. American Journal of Bioethics 8: 14–16. and (
- 2005) Comment on: A Report of the American College of Medical Genetics. Report titled Newborn Screening: Toward a Uniform Screening Panel and System, Submitted as public comment. Available for inspection at Maternal and Child Health Bureau/Health Resources and Services Administration Office, Rockville MD. et al. (
- British Medical Association (1998) Human Genetics: Choice and Responsibility. Oxford, UK: Oxford University Press.
- 2001) Closing the gaps in genetics legislation and policy: a report by the New York state task force on life and the law. Genetic Testing 5: 275–280. and (
- 2008) Research ethics recommendations for whole-genome research: consensus statement. PLoS Biology 6: 430–435. , , et al. (
- 2003) A vision for the future of genomics research. Nature 422: 835–847. , , et al. (
- Council for International Organizations of Medical Sciences (2008) International Ethical Guidelines for Epidemiological Research pp. 1–113.
- 1994) Legal issues in predictive genetic testing programs. Alzheimer Disease and Associated Disorders 8: 94–101. (
- 1994) Generic consent for genetic screening. New England Journal of Medicine 330: 1611–1613. and (
- 1997) Prenatal genetic carrier testing using triple disease screening. Journal of the American Medical Association 278: 1268–1272. , , et al. (
- 2003) Genetic exceptionalism in medicine: clarifying the differences between genetic and nongenetic tests. Annals of Internal Medicine 138: 571–575. and (
- 2003) Molecular genetic risk screening. Annual Review of Medicine 54: 473–490. (
- 1998) Carrier screening for cystic fibrosis, Gaucher disease, and Tay–Sachs disease in the Ashkenazi Jewish population. Archives of Internal Medicine 158: 777–781. , and (
- 2008) What will whole genome searches for susceptibility genes for common complex disease offer to clinical practice? Journal of Internal Medicine 263: 16–27. and (
- 2008) From genetic privacy to open consent. Nature Reviews. Genetics 9: 406–411. , , et al. (
- 2008) Informed consent in the genomics era. PLoS Medicine 5: 1302–1305. , , et al. (
- 2008) Expanded newborn screening: implications for genomic medicine. Annual Review of Medicine 59: 163–175. and (
- National Human Genome Research Institute (2008) Applying Genomics to Clinical Problems-Diagnostics, Preventive Medicine, Pharmacogenomics: A White Paper. Bethesda, MD: The National Human Genome Research Institute, National Institutes of Health.
- 2009) Ethical and juridical issues of genetic testing: a review of the international regulation. Critical Reviews in Oncology/Hematology 69: 98–107. (
- 2009) On Jim Watson's APOE status: genetic information is hard to hide. European Journal of Human Genetics 17: 147–149. , and (
- 2008) Drug therapy and personalized health care: pharmacogenomics in perspective. Pharmaceutical Research 25: 2713–2719. (
- 2005) Review article: disability studies today and tomorrow. Sociology of Health and Illness 27: 138–148. (
- 2007) Ethical implications of array comparative genomic hybridization in complex phenotypes: points to consider in research. Genetics in Medicine 9: 626–631. and (
- The President's Council on Bioethics (2008) The Changing Moral Focus of Newborn Screening: An Ethical Analysis. The President's Council on Bioethics, Washington DC.
- 2002) Serious genetic disorders: can or should they be defined? American Journal of Medical Genetics 108: 29–35. and (
- 2007) Recent advances in newborn screening. Journal of Inherited Metabolic Diseases 30: 129–133. (
- World Health Organization (2001) Review of Ethical Issues in Medical Genetics. Geneva, Switzerland: WHO.
- 2001) A public health response to emerging technology: expansion of the Massachusetts newborn screening program. Public Health Reports 116: 122–131. , , et al. (
- 1999) Gaining informed consent for screening. British Medical Journal 319: 722–723. (
- 1997) Genetic testing for susceptibility to adult-onset cancer: the process and content of informed consent. Journal of the American Medical Association 277: 1467–1474. (
- 1997) Public participation in medical policy-making and the status of consumer autonomy: the example of newborn-screening programs in the United States. American Journal of Public Health 87: 1280–1288. , and (
- 2001) Putting the genetics genie back into its bottle. British Medical Journal 322: 1070. (
- 2001) Genetic services for children: who should consent? In: Mahowald MB, McKusick VA, Scheuerle AS and Aspinwall TJ (eds) Genetics in the Clinic: Clinical, Ethical, and Social Implications for Primary Care, pp. 167–179. St Louis, MO: Mosby. (
- 1996) Genetic screening, testing and treatment: how far can we go? Journal of Inherited Metabolic Diseases 19: 401–411. (
- CARTaGENE http://www.cartagene.qc.ca/index.php?lang=english
- deCODE genetics http://www.decode.com/Company/Index.php
- European Society of Human Genetics. Population Genetic Screening Programmes: Principles, Techniques, Practices and Policies. http://www.eshg.org/Genetic%20screening%20principles.pdf
- Human Genetics Commission http://www.hgc.gov.uk/Client/library.asp
- Human Genetics Commission. Inside Information Balancing Interests in the Use of Personal Genetic Data, UK http://www.hgc.gov.uk/insideinformation/index.htm
- HumGen www.humgen.org
- Multiplex Initiative http://www.genome.gov/25521052
- National Coalition for Professional Education in Genetics http://www.nchpeg.org/
- New York State Task Force on Life and the Law. Genetic Testing and Screening in the Age of Genomic Medicine. http://www.health.state.ny.us/nysdoh/taskfce/screening.htm
- Ontario Government. Ontario Report to Premiers: Genetics, Testing and Gene Patenting: Charting New Territory in Healthcare. http://www.gov.on.ca/health/english/pub/ministry/geneticsrep02/report_e.pdf
- UK Biobank http://www.ukbiobank.ac.uk/
- World Health Organization Advisory Committee on Health Research. Genomics and World Health. http://www3.who.int/whosis/genomics/genomics_report.cfm