Sudden Cardiac Death screening: notes of caution

By Lynley Anderson & Lynne Bowyer
Bioethics Centre, University of Otago

In his guest post on the BJSM Blog entitled ‘Call for NHS to review its policy on screening of young people at risk of sudden cardiac death’ Dr Steven Cox laments the decision of the National Screening Committee not to offer screening to young athletes (14-35 years). The National Screening Committee’s decision is in direct conflict with the position advocated by the organisation ‘Cardiac Risk in the Young’ (CRY) which is to offer screening to all young athletes.

We support screening where such screening is robust and can offer valuable and accurate information to young people and their families in making decisions about participation in sport. Unfortunately the current screening programme is not adequately robust and accurate. This is also a concern of the National Screening Committee 2009 stating that: ‘Owing to the multiple causes of SCD and the ambiguity of data collection, the accurate estimation of the incidence of death from these conditions is extremely difficult and unreliable.’As we have stated in our recent article on this issue, ‘death is not inevitable for those diagnosed with a SCD-linked condition, nor will abstaining from competitive sport ensure survival’. Despite the lack of definitive science, Cox wishes to establish a national screening programme on the grounds that prevention is central to a national health system. If CRY were to achieve its aims, it is important to consider the implications of adopting such a programme. Among the issues for consideration are concerns about consent, confidentiality, and what to do in the event of a positive result.

 

Consent

If screening is offered to all athletes, who decides whether any particular individual shall be screened? In the case of the younger athlete, should that decision be made by parents or the young person, and what should happen in the event of a disagreement? Although CRY advocate that screening should be offered and therefore left to the discretion of the athlete, how will this level of voluntariness be maintained? Could a club insist that all athletes are screened, and what could be the consequences of withholding consent in this situation?

 

Confidentiality

Once a screening result is available who will have access to that information? Would the results be provided solely to the athlete, or in the case of the younger athlete will they also be given to parents? Will coaches, sporting bodies and team doctors also be provided with the results? The athlete needs to be fully aware of who will receive the results prior to undertaking screening.

 

Decisions about whether to continue to play

What are the next steps once a positive test is discovered? There is perhaps a perception that once discovered, the athlete will decide to discontinue, but what actions might be imposed if that person wishes to continue to play? Should that person be permitted to play where risk factors exist, and who gets to make that decision? We argue that mandatory exclusion of positive testing athletes is not a defensible option.

 

Setting aside the debate regarding the science underpinning SCD screening, any implementation requires a full consideration of its complexities and ramifications. Although a screening programme is beneficent in its aims, we need also to recognise that there are limits to the ways in which we can intervene in the lives of others.

 

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Lynley Anderson is a Senior Lecturer at the Bioethics Centre/Te Pokapū Matatika Koiora, Division of Health Sciences, University of Otago.

 

 Lynne Bowyer is a PhD Student at the Bioethics Centre, University of Otago.

 

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