Why Data Sharing Will Help Advance Genomic Treatment

A professional organization claims that the open exchange of clinical data and laboratory patients to complete the results of genetic testing.
The American College of Genetics and Genomics took the position in the latest issue of its journal, Genetics in Medicine. The group takes the position because it believes disclosure of these data is crucial to ensure that patients receive "the most informed care possible."

Moreover, the exchange of information will allow clinical laboratories working with the results of genetic and genomic tests to obtain the best results, the organization said. And it is said that better information sharing practices are more likely to yield results that provide benefits to global medical research.

The message comes ACMG Board and is designed as an educational resource for geneticists and other medical health care providers.

The organization notes that in particular in the treatment of rare genetic diseases, there is a wide variety of "clinical presentation and molecular etiology of genetic disorders." With the 5 000-7 000 other different genetic diseases that physicians face, a collaborative approach to collecting information on these diseases is crucial, says the organization.

"No single provider, laboratory, medical center, state or even individual countries generally have sufficient knowledge to provide the best care to patients," he says.

Because genetic testing detects variants requiring specialized care, it requires information widely shared between providers in order to achieve the most effective treatment, ACMG said.

"The information on which the delivery of health services is based should not be treated as intellectual property or trade secret as when other patients can benefit from the widely available knowledge," the organization notes.

"The data exchange in this pre-competitive space will provide a resource for both clinical laboratories interpreting test results and clinical validity of data that can help device manufacturers to develop tests and new test platforms" The statement added.

Making the most widely available clinical information can also make richer existing data sets, improving the chances that they can be used to help solve troublesome medical problems.

"Contributing to public clinical databases in the precompetitive area recognizes that information on genetic diseases is dense and rapidly accumulates, and information science is the enhancement of the use of large data," the article notes. "In addition, moving to public databases populated with information on cases identified from electronic health records will accelerate the" publishing "time of what is essentially real-time event reporting.

The CGPA document notes that the importance of data exchange is increasingly recognized as crucial to gaining more benefits from genomic testing and information collected in the clinical care of patients.

The importance of shared data for both research and clinical care was recently highlighted by a policy of National Institutes of Health, which set a standard for its funded researchers with responsibility for sharing information on genomic variants and phenotypic data. This will provide the solid information needed to improve clinical care and the autonomy of drug devices and manufacturers that develop testing and treatments for patients.

However, it is difficult to achieve an open exchange of information, admits the position paper.

"The challenges of analyzing migration and integrating clinical and laboratory data across the genome are formidable," says the organization. "The standardization of clinical and laboratory information allows the compatibility and interoperability of data between information systems." Enhanced data security systems are also essential for secure data exchange