Genetic profiling of newborns: ethical and social issues

Identifying genetic factors that could reliably predict health risks for individuals has the potential to bring great health benefits, both for the individuals concerned and for health-care providers. Genetic profiling at birth would allow a person's genome to be analysed at an early stage, and the data electronically stored for future use. However, although this might seem like an attractive proposition, it carries with it serious ethical and social concerns that would need to be addressed if the genetic profiling of newborns were ever to be considered on a population-wide basis.

[1]  J. Austoker Gaining informed consent for screening , 1999, BMJ.

[2]  Jon Emery,et al.  Genetics education for primary-care providers , 2002, Nature Reviews Genetics.

[3]  C. T. Farley,et al.  Accurate Multiplex Polony Sequencing of an Evolved Bacterial Genome , 2008 .

[4]  S. Dalby GIG response to the UK Clinical Genetics Society report "The genetic testing of children". , 1995, Journal of medical genetics.

[5]  N. Green,et al.  Neonatal screening by DNA microarray: spots and chips , 2005, Nature Reviews Genetics.

[6]  T. Marteau,et al.  Genetic risk and behavioural change , 2001, BMJ : British Medical Journal.

[7]  T. Marteau,et al.  The troubled helix: Evaluating carrier testing: objectives and outcomes , 1996 .

[8]  D. Melzer,et al.  Genetics and medicalisation , 2002, BMJ : British Medical Journal.

[9]  C. Carlson,et al.  Mapping complex disease loci in whole-genome association studies , 2004, Nature.

[10]  S. Holm Informed Consent and the Bio-banking of Material from Children , 2005, Genomics, society, and policy.

[11]  M. Relling,et al.  Moving towards individualized medicine with pharmacogenomics , 2004, Nature.

[12]  N. Holtzman,et al.  Will genetics revolutionize medicine? , 2000, The New England journal of medicine.

[13]  M. Steel The Troubled Helix: Social and Psychological Implications , 1997 .

[14]  A. Petersen Counselling the genetically ‘at risk’: The poetics and politics of ‘non-directiveness’ , 1999 .

[15]  C. Dezateux,et al.  Fortnightly Review: Neonatal screening for sickle cell disorders: what about the carrier infants? , 1996, BMJ.

[16]  M. Olivier A haplotype map of the human genome. , 2003, Nature.

[17]  M. Olivier A haplotype map of the human genome , 2003, Nature.

[18]  James R. Knight,et al.  Genome sequencing in microfabricated high-density picolitre reactors , 2005, Nature.

[19]  R. Zimmern,et al.  Genetic tests and their evaluation: Can we answer the key questions? , 2004, Genetics in Medicine.

[20]  M R Natowicz,et al.  Discrimination as a consequence of genetic testing. , 1992, American journal of human genetics.

[21]  M. Daly,et al.  Genome-wide association studies for common diseases and complex traits , 2005, Nature Reviews Genetics.

[22]  M. C. Ellis,et al.  A novel MHC class I–like gene is mutated in patients with hereditary haemochromatosis , 1996, Nature Genetics.

[23]  C. Laberge,et al.  Newborn Screening, Banking, and Consent , 2004 .

[24]  A. Clarke,et al.  The genetic testing of children. Working Party of the Clinical Genetics Society (UK) , 1994, Journal of medical genetics.

[25]  E. Beutler Penetrance of haemochromatosis , 2003, Gut.

[26]  C. P. Morris,et al.  Haemochromatosis and HLA–H , 1996, Nature Genetics.

[27]  S. Michie,et al.  Predictive genetic testing in children: The need for psychological research , 1996 .

[28]  J. Sulston,et al.  Genetic equity , 2004, Nature Reviews Genetics.

[29]  London,et al.  General Medical Council , 1920 .

[30]  A. Clarke The genetic testing of children. , 1995, Journal of medical genetics.

[31]  E. Beutler The HFE Cys282Tyr mutation as a necessary but not sufficient cause of clinical hereditary hemochromatosis. , 2003, Blood.

[32]  J. Bell Predicting disease using genomics , 2004, Nature.

[33]  The search for a sequencing thoroughbred , 2005, Nature Biotechnology.

[34]  A. Fryer Inappropriate genetic testing of children , 2000, Archives of disease in childhood.

[35]  M. Sevick,et al.  Genetic Testing of Children for Late Onset Disease , 2005, Cambridge Quarterly of Healthcare Ethics.

[36]  David R. Bentley,et al.  Genomes for medicine , 2004, Nature.