Resolution on Maintaining Confidentiality of Patient-Identifiable Information Exposed

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The Resolution on Maintaining Confidentiality of Patient-Identifiable Information was adopted by ALEC's Health and Human Services Task Force and approved by the ALEC Board of Directors in 1997. According to ALEC.org, the Resolution was re-approved by the Board of Directors on January 28, 2013. (Accessed on 2/10/2016).

ALEC Bill Text

WHEREAS, recent developments in the area of information technology have stimulated public concern over confidentiality of patient-identifiable medical information: and

WHEREAS, the federal Health Insurance Portability and Accountability act (HIPAA) requires the development of detailed federal standards with respect to the privacy of individuality identifiable health information; and

WHEREAS, confidentiality requirements should be comprehensive in assuring patients that information identifying them and their medical condition or predisposition to any specific condition is confidential information; and

WHEREAS, state and federal policies must accomplish twin objectives of protecting the privacy of individual patients, while also protecting the continued viability of research and the coordination of health care research to promote improved quality of health care for all patients; and

WHEREAS, patients benefit from improved health care interventions, including early detection and timely preventive services, as well as the many new medicines which have been brought to the market this past year: new weapons against HIV/AIDS, several new anti-cancer drugs, a new anti-depressant and a new anti-psychotic drug, new treatments for chronic diseases such as diabetes and asthma, and for many other deadly and debilitating diseases: and

WHEREAS, continued progress of this magnitude depends on aggressive, multifaceted research, including:

  • Basic science that allows us to understand disease processes,
  • Practical research and development that finds the right way to combat the disease,
  • Clinical trials required by law to demonstrate the safety and efficacy for potential products,
  • Large-scale epidemiological research and health services research that helps to determine how a product performs in realistic applications and to detect rare side-effects and unsuspected benefits that may nit show up in relatively unsuspected benefits that may not who up in relatively limited trails, and
  • Outcomes research and economic studies to permit the evaluation for the cost-effectiveness of modern medical interventions; and

WHEREAS, innovations in medical science, in combination with developments in genomic technologies are revolutionizing medical research and the future of health care as they begin to reveal the molecular basis of human illnesses; and

WHEREAS, legislation aimed at preserving the confidentiality of patient medical information should be carefully crafted to allow the continuation of vital medical research and the provision of high quality health care applying the knowledge gained from such research; and

WHEREAS, genetic information cannot be scientifically or practically separated from other medical information and should not be regulated individually either, and

WHEREAS, establishing ownership of medical information and samples is not an appropriate mechanism for protecting privacy, and instead will hinder research, potentially deprive patients of the opportunity to participate in clinical trials, create potential conflicts with the certification and licensure requirements applicable to providers and practitioners and hinder their ability to provide high quality care.

NOW THEREFORE BE IT RESOLVED that any state or federal legislation to protect the confidentiality of individuality identifiable medical information should ensure that vital medical research is encouraged and facilitated, should protect the current practice of storing tissue samples and medical information which is critical to medical research and the legal operation of health care institutions and the delivery of quality health care, and should not require the destructions of medical information and samples; and

FURTHER, BE IT RESOLVED that establishing ownership of medical information and samples is not an appropriate mechanism for protecting privacy.

Adopted by the HHS Task Force and approved by the ALEC Board of Directors in 1997.

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