A professional organization is calling for the open sharing of patients’ laboratory and clinical data to complement the results of their genetic testing.
The American College of Medical Genetics and Genomics took the position in the most recent edition of its journal, Genetics in Medicine. The group is taking the position because it believes that the release of that data is crucial to ensuring that patients receive “the most informed care possible.”
In addition, sharing information will enable clinical labs that are working with the results of genetic and genomic testing to achieve the best results possible, the organization believes. And it says that better information sharing practices are more likely to achieve results that provide benefits to overall medical research.
The position comes from ACMG’s board of directors and is intended as an educational resource for medical geneticists and other healthcare providers.
The organization notes that, particularly in treating rare genetic diseases, there is a wide variety in “clinical presentation and molecular etiology of genetic disorders.” With the 5,000 to 7,000 rare genetic diseases facing clinicians, a collaborative approach in gathering intelligence on these diseases is crucial, the organization says.
“No single provider, laboratory, medical center, state or even individual country will typically possess sufficient knowledge to deliver the best care for patients,” it contends.
Because genetic testing detects variants that require specialized care, that requires information to be widely shared among providers in order to achieve the most effective treatment, ACMG says.
“Information that underpins healthcare service delivery should be treated neither as intellectual property nor as a trade secret when other patients may benefit from the knowledge being widely available,” the organization’s position paper notes.