A C T I V I T I E S    S P O N S O R E D   B Y   T H E
ACMG Foundation’s Robert C. Baumiller Fund for Genetics and Society

 

It has become an ACMG Foundation tradition to use the monies available in this Fund to sponsor educational programs during the ACMG Annual Clinical Genetics Meetings that challenge attendees’ thinking about contemporary issues at the crossroads of science and society. Father Baumiller was deeply interested in, and concerned about, these issues; much of his life’s work involved fostering public and professional dialogue that strove for solutions through which the best interests of all stakeholder communities could be served.

 

DTC Cheek Swab  

Presidential Plenary Session: Direct to Consumer Genomics and Personalized Medicine

March 29, 2009 ACMG Annual Clinical Genetics Meeting, Tampa, FL

 

 

  Session Description: With increased understanding of the genetic basis of disease, a burgeoning cottage industry is offering direct-to-consumer (DTC) genetic tests to the public. Some of these tests are presently difficult to interpret and may present patients with confusing and/or unexpected results. This symposium
explored the scientific basis for DTC tests, the industry perspective on offering such tests, and the governmental response to calls for regulatory oversight.
     
Moderator    
Joe Leigh Simpson, MD, FACMG
ACMG President and Florida International University, Miami, FL
 
Presenters    
Establishing the Scientific Foundation for using Personal Genome Profiles to Improve Health and Prevent Disease
Muin J. Khoury, MD, PhD
Centers for Disease Control and Prevention, Atlanta, GA
 
A State’s View of Genetic Profiling Services
Ann Willey PhD, JD
NYS Department of Health, Albany, NY
 
Consumer Empowerment and Translational Medicine: By the People, For the People
Linda Avey, PhD
23andMe, Mountain View, CA
 

Panel Discussion/Q&A: Linda Avey, PhD; Marlyn Jones, MD, FACMG; Muin J. Khoury, MD, PhD; Bruce Korf, MD, PhD, FACMG; Ann Willey, PhD, JD

 

     

 

LTFU Counseling  

Closing Plenary Session: Delivering Genomic Testing Results to Patients

March 20, 2011 ACMG Annual Clinical Genetics Meeting,
Vancouver, BC, Canada

   
  Session Description: Genomic testing is making the jump from the research arena to routine healthcare and medical geneticists will increasingly be on the front lines, interpreting and delivering personal genomic data to patients. This panel looked at the challenges
associated with this task from the viewpoints of all members of the genetics team—a genetic counselor, a laboratory directory and clinical geneticists.
 
Moderator
Michael F. Murray, MD, FACMG
Brigham and Women’s Hospital, Boston, MA
 
Presenters
The Molecular Geneticist and Genomic Results: What Tools Do We Need?
Heidi L. Rehm, PhD, FACMG
Partners Healthcare and Harvard medical School, Boston, MA
 
Counseling Genomics Patients in a Cohort Study with Four Thousand Patients, What Are We Telling Them and What Are They Telling Us?
Erynn S. Gordon, MS, CGC
Coriell Institute for Medical Research, Camden, NJ
 
Lessons from the REVEAL Study: What Do People Do When We Tell Them About Genetic Risk for Common Disease?
Robert C. Green, MD, MPH
Boston University School of Medicine, Boston, MA
 

The Patient Provider Interaction on Genomic Results: An Extended Visit
Michael F. Murray, MD, FACMG
Brigham and Women’s Hospital, Boston, MA

 

       

 


 

Bad News Counseling  

Concurrent Session: Homozygosity: Perspectives in the Genomics Era

March 22, 2013 Annual Clinical Genetics Meeting, Phoenix, AZ

 

 

  Session Description: Homozygosity mapping (searching for genetically identical segments of DNA in individuals affected with recessive conditions) is a well-known approach to mutation identification and diagnosis. With the advent of SNP microarray and whole genome/exome sequencing this tool offers
exciting opportunities to improve molecular diagnosis. However, incidental (and often unexpected) findings present ethical, legal, and moral challenges for members of the medical genetics team, which will be explored in this session.
 
Moderator
Kristen Sund, PhD, MS, CGC
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH

 

Presenters

Homozygosity Revealed through Whole-Genome Interrogation: Analytical and Interpretive Considerations
Hutton Kearney, PhD, FACMG
Fullerton Genetics Center, Asheville, NC

 

Challenges for Genetics Professionals Reporting and Counseling for Homozygosity
Lauren Grote, MS
University of Cincinnati, Cincinnati, OH

 

Duty to report: Ethical/Legal Issues when Excessive Homozygosity Suggests Parental Incest or Abuse
Rebecca Rae Anderson, JD, MS, CGC
Nebraska Medical Center, Omaha, NE

 

Looking at the Human Genome through the Lens of the Autozygome
Fowzan S Alkuraya, MD, FAAP, FACMG
Alfaisal University and King Faisal Specialist Hospital and Research Center, Riyad Saudi Arabia