ACMG provides guidelines for protecting patient genomic data and preventing unfair discrimination and misuse of genetic information

BETHESDA, Md., Dec 16, 2021 / PRNewswire / – The American College of Medical Genetics and Genomics (ACMG) has just released two highly anticipated companion documents, “Responsibility for Genomic Patient Data: A Declaration of Principles by the ACMG” as well as “Points to Consider to Avoid Unfair Discrimination and Misuse of Genetic Information: A Statement from the American College of Medical Genetics and Genomics. “

As a leader in the advancement of genomic medicine, the ACMG is committed to educating the public about the benefits and risks of genetic testing, and to protecting and preserving the well-being, autonomy and privacy of patients.

“Sharing genomic information and data is essential to improve the quality of care for our patients and to spread knowledge in an area that is rapidly moving forward,” said ACMG President Marc S. Williams, MD, FACMG. “However, there is the possibility of misuse of this information, which can lead to damage. These two documents deal with weighing the benefits and harms and provide guidelines for well-founded solutions that can improve the benefits of sharing genetic information while minimizing the risk to our patients. “

ACMG noted in its politics Explanation that the exchange of anonymized genomic data is a potential way of invading privacy that is inadequately protected by applicable regulations and norms of practice. Consequently, the ACMG has determined that there is an imperative to establish standards of practice for the sale, transfer, or exchange of clinical and genetic information from humans, for the benefit of the privacy, consent and trust of patients and community members Public.

in the Policy statementThe ACMG defined eight key elements related to the use, disclosure and sale of anonymized patient or consumer data obtained through screening or diagnostic tests. These elements include areas such as patient notification / consent, testing laboratory responsibilities, data usage agreements, and the resale or distribution of genomic data.

“With the remarkable advances in genomic technologies and bioinformatics moving medical genetics ever closer to the center of medicine, we have recognized the growing need to make explicit the ethical obligations of geneticists and caregivers as administrators of entrusted samples and Information has to act on us from patients and the general public, “said the lead author of the policy statement Robert G. Best, PhD, FACMG. “Protecting the well-being, autonomy and privacy of those who depend on us for their care is essential to the ACMG vision as we empower our members in integrating genetics and genomics into all of medicine and.” to lead healthcare to promote personal development and public health. ”

While this policy is primarily aimed at sharing genetic data and samples received by a clinical laboratory with outside institutions, the college encourages full transparency to patients and consumers about the many ways that patient samples and data are in Laboratory processes are integrated, such as quality assurance, test development and knowledge sharing through public genomic data storage.

Laurie H. Seaver, MD, FACMG and lead author of the Points to be observed Explanation said: “The original ACMG Points to Consider (PTC) Document Regarding Unfair Genetic Discrimination was released 20 years ago. Given the widespread use of genetic testing for medical and non-medical purposes, the ACMG Committee on Social, Ethical and Legal Issues (SELI) felt it was important to reassess concerns about the possibility of unfair genetic discrimination. Our diverse working group included representative voices from clinical genetics, laboratory genetics, genetic counseling, bioethics, law, and families / consumers. We began our work by reviewing and summarizing the relevant legislation, which focused on labor and health insurance, but then broadened our scope by addressing issues of social justice, life and disability insurance, and the importance of privacy and security in the Preventing misuse of genetic information and unfair genetic information highlighted discrimination. “

the Points to be observed Explanation concludes that advances in our understanding of human health and disease today are often based on shared genomic data. Attention then needs to focus on the appropriate and equitable use of this data for both individuals and society, realizing that the data could be used to unfairly discriminate now or in the future; and that strategies must be developed to prevent or curb such abuse. ACMG noted the need to address both real and perceived concerns about genetic discrimination and the importance of having an in-depth, post-informed consent session addressing the use of genetic data and any privacy concerns for genetic testing. The statement also concludes that solid federal legislation to protect the privacy and security of genetic information is vital; and stresses the need to work actively to increase the diversity of reference databases and the diversity of the workforce in the genetics field.

The ACMG recognizes that genetic information also has the potential to contribute to unfair discrimination in other areas of society such as education, housing, finance and law enforcement. As such, the ACMG knows that it plays a critical role in identifying and preventing unfair genetic discrimination and will continue to work to that end.

“Advances in our understanding of human health and disease are based on shared genomic data. We need to focus on the correct and equitable use of this data for both individuals and society, and how the data could be used for unfair discrimination now and in the future, and develop strategies to prevent such abuse in the future or contain, “concluded Dr. Seaver.” These ACMG documents will provide a framework for further policy, practice and legislation related to genetic information. “

Via the American College of Medical Genetics and Genomics (ACMG) and the ACMG Foundation

Founded in 1991, the American College of Medical Genetics and Genomics (ACMG) is the only nationally recognized professional medical organization devoted solely to improving health through the practice of medical genetics and genomics, and the only medical association in the United States to cover the full spectrum represents spectrum of medical genetics disciplines in a single organization. The ACMG is the largest membership organization dedicated to medical geneticists, providing education, resources and a voice to more than 2,400 clinical and laboratory geneticists, genetic counselors and other health care professionals, nearly 80% of whom are certified in medical genetics. The ACMG’s mission is to improve health through the clinical and laboratory practice of medical genetics, as well as advocacy, education and clinical research, and to lead the safe and effective integration of genetics and genomics into all of medicine and healthcare, leading to improved personal and healthcare. Four overarching strategies guide the work of the ACMG: 1) To strengthen and develop the ACMG’s position as the leading and leading authority in the field of medical genetics and genomics, including clinical research, while at the same time educating the medical community of the vital role that that genetics and genomics will continue to play a role in understanding, preventing, treating and curing diseases; 2) Securing and expanding the number of specialists in medical genetics and genomics; 3) advocate for the specialty; and 4) to provide first class education to members and non-members. Genetics in Medicine, published monthly, is the official ACMG journal. ACMG website, provides resources such as policy statements, practice guidelines, educational programs, and a tool for finding a genetic service. ACMG’s education and health programs depend on charitable donations from corporations, foundations, and individuals through the ACMG Foundation for Genetic and Genomic Medicine.

Kathy Moran, MBA
[email protected]

SOURCE American College of Medical Genetics and Genomics

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