The ethics of genetic testing and research in sport

Abstract

The human genome was first mapped in 2003 at a cost of US$2.7 billion and took 13 years to complete. The same procedure can be conducted in 2017 for less than US$1000 over a period of three days. Rapid acceleration of genetic science over the past decade has opened doorways of opportunity to understand the genetic basis of disease and health in humans. Genetic science has created the possibility of ‘personalised medicine’ where patients can understand their individual susceptibility to disease, the likelihood that they will or won’t have side-effects from particular medications and the likelihood that they will or won’t respond to specific forms of chemotherapy. Medical practitioners use genetic testing in daily practice to diagnose conditions such as haemochromatosis, coeliac disease, cystic fibrosis and Huntington's disease. In sport there are particular ethical challenges related to genetic testing and research. Costs associated with genetic testing and research are falling rapidly while availability and access to testing is increasing. Direct to consumer testing companies are springing up around the world, allowing the opportunity for individuals to have their DNA sequenced and advice provided on the basis of that sequencing, without any involvement of a medical practitioner. Unscrupulous operators are purporting to provide advice to athletes, coaches and sporting organisations based on information which is not supported by current scientific evidence. These companies often have sophisticated and aggressive marketing strategies. It is likely that in the near future sport will face integrity scandals involving unethical use of genetic information and non-evidence based advice being given to athletes and others. It is important that general practitioners, physiotherapists, sports scientists and sports physicians understand the potential dangers and pitfalls of becoming involved with direct to consumer companies for the purposes of genetic testing. Genetic research also poses specific challenges for health professionals in sport. Athletes are potentially vulnerable in terms of their relationship with coaches and sporting organisations who may wish the athlete to participate in genetic research. The rights of athletes need to be protected when they are providing samples of genetic material for analysis. This presentation will highlight the ethical issues need to be considered by general practitioners, physiotherapists, sports scientists and sports physicians considering involvement in genetic testing or genetic research projects.