DNA Bank Preserves Family Health History
October 27, 1999

In the not-too-distant future, experts say, science will have unraveled many of the secrets of human genetics. Most gene defects that cause disease will be identified. A look at your own genes or those of your family members will give you a heads-up on possible health trouble down the road.

With that in mind, it makes sense to collect a DNA record of your family members now, so you or future generations will know what medical maladies may run in your bloodline and what diseases your future may hold. 

At least that's the thinking behind the New Jersey firm GeneLink. Billed as the world's first family-centered DNA bank and hereditary genetic information service, GeneLink has been in the business of collecting and storing family DNA since 1996. 

"Seventy-six percent of all medical diagnoses right now are made from medical records," says John DePhillipo, the chairman and CEO of the Margate, N.J.-based firm. "Current science is diagnosis and prognosis: 'You've got cancer, let's radiate. Genetics, however, is going to be prediction and prevention: 'You may get this disease, let's do something about it. It's a different scientific approach."

Among those singing the praises of this new high-tech bank are renowned crooner Vic Damone and his new wife, Rena Rowan, co-founder and designer of the Jones of New York fashion line.

This summer, Damone and Rowan discovered that DePhillipo, a neighbor they frequently chatted with on the beach outside their Margate home, was involved in the DNA business. 

"As soon as he told me what he did, I went, 'Wow - everyone needs that. I'd like to have my DNA stored, for my kids, and grandkids and great-grand kids," recalls Damone, who has since become a paid spokesman for the company.

Vic Damone

The following week, DePhillipo, sent over a couple of his company's FDA-reviewed, do-it-yourself DNA collection kits. Once processed, the Damones' DNA samples will be stored for 25 years or more, and will be 
accessible to family members only.

The collection process is simple, non-invasive--"and painless," notes Damone. You simply take a sterilized cotton swab from the kit and brush the inside of your cheek, making sure a healthy amount of saliva is collected. Then place the swab in the kit, seal it, and return it to the company, along with a form on which you record the details of your known medical history. 

Once the samples are received at GeneLink, the DNA is extracted. Two separate vials are prepared and barcoded, then sealed for shipment to the University of North Texas, located in Denton. There the DNA is checked for quality assurance. The vials are then resealed and placed in cold storage at minus 80 degrees Fahrenheit. DePhillipo says GeneLink has a long-term deal with the university to store the material.

How can people be assured that the DNA collected doesn't get mixed up with someone else's? And, most importantly, what are the guarantees that this information remains private? 

DePhillipo explains that the Texas storage facility receives only the barcode information. At GeneLink, the barcoded numbers and all the data on who's DNA is in the vials is secured and kept on file. "This is like your Swiss account for your most valuable asset in the 21st century - your DNA," he says.

Is there really value in having such a procedure done?

"Absolutely," says geneticist Karen Nelson of The Institute for Genomic Research (TIGR), a Rockville, Md.-based organization that is among several working on the federal government's Human Genome Project. "Today, we couldn't use all of the information in a DNA record, but in the future you would be able to look at samples from your mother or grandmother or great grandmother and see whether they carry the traits for breast cancer or colon cancer." 

That information could allow future family members to take measures to prevent the disease. "The same could hold true for men and prostate cancer, or anyone and high blood pressure or diabetes," Nelson adds.

At the same time, finding a "bad" gene in your family genetic history is no reason to panic. "It's important to remember that environmental factors can also trigger a disease," Nelson advises. "And just because you have a gene for a disease doesn't necessarily mean you'll get it."

On the other side of the coin "a negative test result for cancer does not mean zero risk of cancer," says DePhillipo, "You may go in today and get a genetic screen for a certain cancer, and it may tell you that you are not expressing any mutations in your genes. Yet, DNA information from first or second degree relatives who have passed away may help physicians and scientists identify a mutation and/or a strong scenario in your family's genetic medical record." 

All of which makes GeneLink valuable as a family heirloom, says Damone.

"Think about it. Who knows what medicine will be able to do for someone in two generations given they have enough warning? But you have to know the genetic history of the family."

SOURCE: USA Today
By Jonathan Sackier, M.D., and A.J.S. Rayl, A Doctor in Your House.com