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The Genetics Hotline: Responsibility and Liability When Handling Unsolicited Patient Communications
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About this course

The Genetics Hotline: Responsibility and Liability When Handling Unsolicited Patient Communications
Wednesday, May 20, 2020

2:00 pm – 3:30 pm ET


The session begins with case vignettes, then brief presentations by speakers and follow with a moderated discussion. The cases illustrate the positions in which clinicians, diagnosticians and researchers, find themselves in the era of increased knowledge-sharing and online engagement directly with patients and families. And in practice today, many patients are getting much of their genetics/health information outside of their clinicians' offices in Facebook, Twitter and other online forums, some forming their own online forums for knowledge-sharing and research. Many of the Facebook closed patient groups only contain patients but others count among their members medical geneticists, clinical specialists, surgeons, and genetic counselors. These professionals make up a tiny fraction of the total membership, yet their participation, however limited, is incredibly valuable to the community. In a recent survey as part of a Robert Wood Johnson Foundation grant, participants indicated that one of the main factors that would improve their online group experience was more professional participation. Patients and families are not getting enough information in their brief interactions with their clinicians, and they are going online to these closed groups to find it.


The cases raise several concerns: for example, which state or country's laws will apply when the person sending an email and the person responding to it are in different states/countries? For a clinician, a major question is whether responding to an email or answering a question in an online forum might give rise to a physician-patient relationship, which in turn might lead to medical malpractice liability. Non-clinicians may be liable under a general negligence theory and need to be concerned about whether responding to an inquiry might be perceived as "practice of medicine," which might subject them to sanctions for the unauthorized practice of medicine. Clinician-researchers may be liable under a malpractice or negligence theory, depending on the circumstances. There are various legal risks in communicating with people and responding to their queries. These risks can unquestionably be reduced if one handles the communications carefully, making appropriate disclaimers and disclosures. Physicians and geneticists often tend to overestimate the risks of being sued or fail to realize that there are a lot of things one can do to reduce lawsuit risks. Experts may ask the question whether it is worth it: responding to emails is, in most cases, an uncompensated activity and it is one that can consume a lot of time. If it involves any legal risk, a lot of people decide it's just not worth getting involved. That is understandable, yet it is a shame, because it takes the most knowledgeable people out of the conversation and leaves patients without access to information that could be helpful and useful.


So how do we balance effective support for patients yet protection for professionals from liability? This session will tackle tough questions and provide guidance to the community for how to handle these situations.


Target Audience

All healthcare professionals interested in the diagnosis, management, treatment and prevention of genetic conditions and increasing their understanding of the genetic basis of common, chronic health problems affecting both children and adults will find the programming applicable to their practice.


Case Vignettes - Responsibilities and Liabilities?


Heidi L. Rehm, PhD

The Genetics Hotline

Susan M. Wolf, JD

LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application

Barbara J. Evans, PhD, JD, LLM

Managing Responsibility and Liability in Unsolicited Patient Communications

Adrian Thorogood, BA&Sc, BCL/LLB, LLM

Is there a Legal Duty for Recontact with Variant Reclassification

Jill V. Holdren, MA

Serving Patients Needs Online: How do we Safely Engage?

Wendy K. Chung, MD, PhD, FACMG

Case Examples in Unsolicited Online Patient Communications



Learning Objectives

At the conclusion of this session, participants should be able to:

  1. Recognize common environments and situations under which unsolicited patient contact may occur
  2. Review examples of how physicians have handled unsolicited patient contact
  3. Define the responsibilities that experts have for sharing knowledge and information
  4. Define the liabilities at play for experts (clinical and non-clinician) for providing information to patients in response to email or in an online forum
  5. Discern how to optimize learning and reduce risk when engaging in online dialogue
  6. Distinguish between medical advice and medical information
  7. Identify communication strategies to clarify the limits of one’s responsibilities, promote positive patient outcomes, and avoid liability
  8. Examine the reasons variants are reinterpreted over time and what responsibilities labs, clinicians and patients play in receiving updates to variant classifications
  9. Appropriately support patient-initiated re-contact when variant classifications change over time



Heidi L. Rehm, PhD

Chief Genomics Officer in the Department of Medicine, Center for Genomic Medicine at Massachusetts General Hospital (MGH) 

Susan M. Wolf, JD.

McKnight Presidential Professor of Law, Medicine & Public Policy Faegre Baker Daniels Professor of Law; Professor of Medicine; and Chair of the University’s Consortium on Law and Values in Health, Environment & the Life Sciences, University of Minnesota


Barbara J. Evans

Barbara J. Evans, PhD, JD, LLM

Mary Ann & Lawrence E. Faust Professor of Law and Director of the Center for Biotechnology & Law at the University of Houston Law Center

Adrian Thorogood, BA&Sc, BCL/LLB, LLM

Associate at the Centre of Genomics and Policy (CGP) at McGill University in Montreal, Canada

Jill V. Holdren, MA

Co-founder, The Light Collective, Boulder, CO