News and Events
Rapid advances in science have lead to the identification of a growing number of genes implicated in diseases that are of public health concern - diseases like cancer, heart disease, diabetes, and obesity. These findings hold great promise that could lead to better identifcation, prevention, and treatment. However, the relative ease with which genetic tests can enter the marketplace and be accessed directly by consumers, and gaps in oversight to ensure consumer safety, have led some to warn that consumers should beware. This presentation discusses some of the exciting findings-as well as some of the challenges.
On April, 2009, Ferre Institute, with the support of NYS Assemblywoman RoAnn M. Destito and Senator Joseph A. Griffo, presented to the NYS Legislature in Albany, "Know Your Genome: Proceed with Caution", presented by Joan Scott, MS, CGC.
Joan M. Scott, MS,
Genetics and Public Policy Center
Johns Hopkins University
Washington, DC 20036
On April 2008, Ferre Institute, with the support of NYS Assemblywoman RoAnn M. Destito and Senator Joseph A. Griffo, presented to the NYS Legislature in Albany, "Personalized Medicine; Genetics and Genomics in Action", by Alan Guttmacher, MD .
Alan Guttmacher, MD is the Deputy Director of the National Human Genome Research Institute (NHGRI), helping oversee the institute's efforts in advancing genome research, integrating the benefits of genome research into health care, and exploring the ethical, legal, and social implications of human genomics.
Alan Guttmacher, MD
On April, 2007, Ferre Institute, with the support of NYS Assemblywoman RoAnn M. Destito and Senator Joseph A. Griffo, presented to the NYS Legislature in Albany, "Direct to Consumer Genetic Testing: Is NYS Ready?", by Barbara A. Bernhardt, MS, CGC.
Ms. Bernhardt is a genetic counselor and researcher at the Division of Medical Genetics, University of Pennsylvania Health System, Philadelphia, PA. She has participated in evaluation research for direct to consumer genetic testing. Ms. Bernahardt has served on numerous local and national committees and advisory boards as a genetic counselor and as an expert in ethical, legal and social implications of the Human Genome Project.
This lecture is available on PowerPoint:
Barbara A. Bernhardt, MS, CGC
"Your Role in Shaping Public Policy in the Genetics Era"
Presented by Joan Scott, MS, CGC
On behalf of Utica College and Mohawk Valley Genetics Services of Ferre Institute, Inc. the exciting and prestigious interactive lecture, "Your Role in Shaping Public Policy in the Genetics Era" was presented by Ms. Joan Scott, MS, CGC on April 26, 2006 in the Frank E. Gannet Library concourse at Utica College. Ms. Scott is the Deputy Director of the Genetics and Public Policy Center in Washington,DC.
The role of genetics is emerging as an increasingly important aspect of health care. Information from a genetic test can be used to diagnose disease, identify risk for future disease, or predict treatment response. It can also identify who you are, predict physical traits, or indicate from where your ancestors came. The use of genetic information brings great optimism, but also great concern. Ms. Scott discussed the emerging role of genetics in medicine, the ethical, legal, and moral issues this powerful technology raises, and why the public needs to weigh in on policy debates that are too frequently framed by the extremes.
Joan Scott, MS, CGC
Mohawk Valley Genetic Services
4 Oxford Crossing
New Hartford, NY 13413
On April, 2006, Ferre Institute, with the support of NYS Assemblywoman RoAnn M. Destito and Senator Raymond Meier, presented to the NYS Legislature in Albany, "Public Policy: Genetic Testing and Genomics into the Next Decade.", by Joan Scott, MS, CGC
Ms. Joan A. Scott, MS, CGC discusses the emerging role of genetics in medicine, ethical, legal, and moral issues this technology raises and why the public needs to weigh in on policy debates. She shared examples of other community dialogues fom the Genetic Town Halls series which revealed the significant variation of Americans' attitudes toward genetics, public policy, and the future. In the not-so-distant future, genetic policies will affect millions of people.
Making Sense of the Complexities of Genetics
By Valerie Zehl
Press & Sun-Bulletin
September 6, 2005
Luba Djurdjinovic, program director of Ferre Institute Inc's Genetic Counseling Program in Binghamton, New York, was presented with the 2005 Art of Listening Award from the Genetic Alliance.
It's a quaint little setup: two houses sitting shoulder-to-shoulder on Front Street in Binghamton ,two
addresses with front doors opening to two halves of the same operation. And its nondescript appearance belies the Ferre Institute Inc's function. It's a gateway to some of the most cutting-edge science going on this millennium.
The humble demeanor of Executive Director Luba Djurdjinovic gives no hint of her role with others at the forefront of the genetic revolution. As far as she knows, Ferre offers the only community-based genetic counseling service in the United States . More than 10,000 families have been served since Ferre began in Utica a quarter-century ago.
At its inception a nonprofit group formed in response to the need for infertility services, it now also offers genetic counseling and family-building here and in three other offices in upstate New York. Sharon Terry is the head of the Washington, D.C.-based Genetic Alliance, a coalition of more than 600 disease advocacy groups, which recently awarded Djurdjinovic its 2005 Art of Listening Award. Terry said Djurdjinovic has the ability to make the complexities of the genetics field understandable to those who need its resources. “She's one of the most caring, compassionate genetic counselors there is,” she says.
Genetics jargon isn't comprehensible to a large segment of the population. Mark Kedmon Roth, of Binghamton , had no idea what a teratogen was before he became a Ferre employee. Now he's a tertogen information specialist for Ferre's Pregnancy Risk Network. Teratogens, he explains, are environmental agents that can cause birth defects. People call on him when they're concerned, for example about drugs or workplace hazards that they fear could adversely affect their pregnancies. He first met Djurdjinovic when she was a regular customer at a restaurant he owned at the time, The Copper Cricket in Binghamton . Now that he regularly sees her in a professional context, he realizes the scope of her influence and the depth of her commitment to genetic research. “She's friends with people involved in the Genome Project,” he says. She was, in fact, a research investigator for the National Center Human Genome Research. The curriculum vitae list of her professional affiliations and projects spans several pages.
Dr. Rajesh Dave, local neonatologist and chief medical officer at United Health Services and dean of its clinical campus, can't say enough about Djurdjinovic and her work. “Since (she began her career), the genetic revolution started and now we're looking at the genetic and biological basis of heart disease and cancer,” he says. “Now it's in every aspect of the body, not just involving a mother and child.”
Djurdjinovic provides a bridge not only for consumers to access such services but also for health care professionals to understand the emerging science of genetics and its application to their patients. Dave is aware of many cases she has been involved with, including that of the Conger family. Cliff Conger was born with seldom-seen cardio-facio-cutaneous syndrome. His mother, Brenda, began an international support group for families of similarly affected children. Djurdjinovic support ed Conger throughout her pregnancy and the ensuing years, and most recently in Conger's involvement with starting a national bio-bank of DNA for genetic research. That, Dave says, is extraordinary. “It's extremely unique,” he says. “If I go out and talk to people in my field (about the women's efforts), they'd be blown away. It's absolutely astounding.”
Djurdjinovic lectures widely and is a nationally recognized expert in genetic counseling. She rubs elbows regularly with other leading names in the field. And she's right here, working away behind the modest exterior of the Ferre Institute in Binghamton . I feel very lucky to live in this community,” she says with typical reticence. “I could never have done what I was fortunate enough to do if it were not for the families and the physicians we've worked with here.”
Genes for Rare Syndrome Found with Help of Families CFC genes linked to cancer
United Health Services Telemedicine
We are excited about our new link with the UHS Telemedicine program! This makes multimedia collaboration possible with healthcare providers who have a digital camera and the internet. Clincial information and photographs of patients are entered into a secure site to allow health care providers at other sites to view the case, comment, and make recommendations regarding patient care. To ensure confidentiality, the site is password protected and individuals may only view their referred cases.
The success of the Telemedicine Program has extended beyond the Southern Tier to healthcare providers in Syracuse. It provides physicians in our project catchment area direct access to trained genetic counselors who can assist in risk assessment, make genetic information available to guide physician-patient discussion, selection/application of genetic testing and to guide informed consent. As medicine rapidly finds its diagnostic and treatment infrastructure turning to genetic and genomic tools, the availability of trained genetic counselors assure optimal use of these new approaches in medicine.
In the 2006 project period, our staff was trained to access and utilize the telemedicine site. We review cases directed to us from this service. Our 2007 workplans include a more active use of the website and opportunity for interdisciplinary review of complex cases referred for our diagnostic clinics.