After that, you sit back and you wait for your results to come in and you wait for information to come to you. So if there’s a new survey that comes out, we’ll let you know, and it’s up to the individual, how much, or how little they want to participate. Again, we’d love everyone to continue to complete the surveys as they go along because the more information that we have about lifestyle, environment, family health history, social determinants of health, all of that helps researchers have a more dynamic and full understanding of what is going on. Not only with the individual, but they can see it on a larger scale in communities and different populations.
What’s the difference between participating in a research trial and a research program like this?
La Keisha Jones: One thing with a trial is that you are providing treatment. We do not provide treatment. We are just collecting information to create a data cohort of information for researchers to look at and that would be the difference there. The one thing that we do offer, though, is that if something is discovered individuals are notified. If there is something of health significance with the genetic results that is found, then a genetic counselor is offered to them to explain what this means to them and what it can mean to their family.
Our program is giving information back so that people can have more informed conversations. They can be more informed about their risk for a disease possibly, or the risks that they may or may not face. Again, if something comes back, it doesn’t necessarily mean that disease could take place, but if they are aware of it, they can keep it to themselves or they could share it with their family, or they could take it to their doctor and just say, “Hey, you know, we would never have known this because genetic testing isn’t on the list of things that normally take place and I might be at risk. What should we do about it?” Maybe it means earlier screenings. Maybe it means making healthier decisions.
There are also different levels of participation. Some people just decide they want to do the online portion. Some people want to provide genetic information but not to receive their results. You have the option to say yes, no, maybe, or I don’t know yet.
How can someone get involved?
Lakeisha Jones: Anyone over the age of 18 can enroll. It doesn’t matter if you have any diseases or don’t have any diseases, anything of that sort. We do ask individuals to have an address in the U.S. and contact information here in the U.S. for about six months out of the year, just so that when information is returned, they can make sure that they can be followed up with and be contacted. You don’t need health insurance to participate and you do not need to be a U.S. citizen.
That’s the beautiful thing about New York, too, we have a very diverse staff. Our staff is bilingual, English and Spanish.
To sign up online or find phone numbers of where to talk to someone about the program, you can visit the New York City Consortium website or call 212-205-9927.