Why sharing information will assist advance genomic treatment

A professional agency is calling for the open sharing of sufferers’ laboratory and clinical data to complement the outcomes of their genetic testing. Sharing information will assist the advance genomic treatment.
The American College of Medical Genetics and Genomics took the position in the latest edition of its journal, Genetics in Medicine. The group is taking the position because it considers that the release of that information is crucial to ensuring that sufferers receive “the most informed care possible.”
Additionally, sharing information will enable clinical laboratories that are working with the outcomes of genetic and genomic testing to acquire the best results possible, the agency considers. And it claims that better data sharing practices are more likely to acquire results that give benefits to overall medical research and genomic treatment.
The position comes from ACMG’s board of directors and is proposed as an educational resource for medical geneticists, genomic treatment and other healthcare providers. Sharing information will assist the advance genomic treatment.
The agency notes that, specifically in treating rare genetic ailments, there is a broad variety in “clinical presentation and molecular etiology of genetic disorders.” With the 5,000 to 7,000 rare genetic diseases confronting clinicians, a collaborative approach in gathering intelligence on these diseases is critical, the organization claims.
“No single provider, laboratory, medical center, state or even individual country will generally possess enough knowledge to deliver the best care for sufferers,” it asserts.
Because genetic testing tracks variants that need specialized care that requires data to be immensely shared among providers in case to acquire the most effective treatment, ACMG claims.
“Data that underpins healthcare service delivery should be treated neither as intellectual property nor as a trade secret when other sufferers might benefit from the knowledge being extremely available,” the agency’s position paper notes.
“Sharing information in this precompetitive space will give both a resource for clinical laboratories interpreting test results and clinical validity data that can benefit device manufacturers establishing new tests and testing platforms,” the statement further adds.
Making clinical data more widely available also can make existing datasets richer, making better the chances that they can be utilized to assist solve vexing medical issues.
“Contributing to public clinical databases in the pre-competitive space identifies that information about genetic diseases is dense and accumulating quickly, and that data science is boosting the use of big data,” the article notes. “Moreover, the shift to public databases being populated by de-identified case-level data from electronic health records (EHRs) will speed the time to ‘publication’ of what are necessarily case reports in real time.”
The ACMG paper points out that the significance of data sharing is being more widely identified as crucial in gaining more benefits from genomic testing and information being collected during clinical care of sufferers.
The significance of data sharing for both research and clinical care recently was mentioned by a policy of the National Institutes of Health, which set a directive for its funded investigators to responsibly share data on genomic variants and phenotype data. That will give the robust information important to improve clinical care and empower device and drug manufacturers that are establishing tests and treatments for sufferers.
Although, acquiring the open sharing of information will be complex, the position paper admits.
“The analytic issues of migrating and integrating clinical and laboratory data across the genome are daunting,” the agency notes. “Standardization of laboratory and clinical data will enable data compatibility and interoperability between information systems.” Also, making the security of data systems is crucial in enabling data to be shared safely.