WHO CONTROLS YOUR GENOMIC AND OTHER HEALTH INFORMATION?

WHO CONTROLS YOUR GENOMIC AND OTHER HEALTH INFORMATION?

Who controls your genome sequence and other health information? What should be delivered and how? These are important issues. The answer to who controls your genome information should be obvious—you do. Your DNA sequence is yours and you have a right to it. However, the implementation of this concept is not as straightforward as one might think. What information you want and how it is returned requires serious thought. Do you want all of your information returned to you or just the actionable information? What is your definition of actionable? What if there is uncertainty about the accuracy of the prediction?

As an example of what many people would consider nonactionable information, do you want to know whether you have the Huntington’s high- risk change? If you have the high-risk change for this gene, your chance of getting this progressive neurological (and ultimately fatal) disease is extremely high. There is no cure, however, so the information will not help you medically; that is, there are no treatments or other lifestyle “actions” that one can take to avoid or lessen the ravages of this disease. Some might argue, however, that this information is still actionable, because you might choose to base your life decisions on this information. Examples of actionable information include the breast cancer risk changes (e.g., BRCA1 and BRCA2) or  the  risk  allele  for  hemochromatosis;  individuals  with  these  mutations should get monitored for disease because there are known treatments to mitigate or even cure these conditions. Ultimately, the decision to receive any genetic and medically relevant information should belong to the patient.

KNOWLEDGE BASE
About Genomic Medicine UK

Genomic Medicine UK is the home of comprehensive genomic testing in London. Our consultant medical doctors work tirelessly to provide the highest standards of medical laboratory testing for personalised medical treatments, genomic risk assessments for common diseases and genomic risk assessment for cancers at an affordable cost for everybody. We use state-of-the-art modern technologies of next-generation sequencing and DNA chip microarray to provide all of our patients and partner doctors with a reliable, evidence-based, thorough and valuable medical service.

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