We are often asked why we founded AccessDNA and how we hope to help people.  As a genetic counselor, I often get calls and emails from people located around the country looking for information about their genetic disease or that of a loved one. They may find my name in a directory at the National Society of Genetic Counselors website or they may find our website by doing a Google search and send me an email.  But, either way, they usually reach out because they are having a hard time finding any relevant information about their genetic disease or finding a genetic counselor in their local area since there are so few of us practicing in the United States.

We believe access to credible information and genetic services is critical for individuals and their loved ones when faced with a genetic condition.  Access to genetic counseling is especially important because genetic counselors have specialized training in assessing an individual’s risk to develop or pass on a disease or abnormality.  We are also trained in the medical aspects of the disease, such as symptoms and characteristics, disease management and treatment, as well as the psychological implications of disease on an individual or family.

AccessDNA was founded to help people get guidance and support in this emerging and promising area of medicine.  In an era where our knowledge of the genetics of both rare and common diseases, such as diabetes and heart disease, is rapidly advancing, and tests are being developed daily, everyone can use a little help understanding what this means for themselves and their family.

It starts with reliable information

AccessDNA offers professionally written information on hundreds of medical conditions such as Fragile X syndrome, Alzheimer’s disease and obesity.  This is not like the general medical information that can be found at most medical websites today, but instead covers those issues related to the genetics of the condition such as:

• How the condition is inherited
• The genes and mutations involved
• Who is likely at risk to be affected
• The benefits and limitations of genetic testing

This information is especially important for anyone who is affected, has an affected family member or who is pregnant or planning a pregnancy and is trying to understand their risks.

Mix in some guidance

AccessDNA also helps individuals and their families understand that there are benefits, limitations and sometimes risks, with any type of genetic or DNA testing. Importantly, due to a current lack of regulation in the online, at-home genetic testing market, AccessDNA helps by evaluating all of these providers, including the personal genomics (whole genome scanning) companies, based on guidelines established by professional medical organizations. These criteria currently include:

• Does the test provider use only CLIA certified labs?
• Does the test provider have adequate security and encryption policies?
• Does the test provider involve a physician in the ordering or test authorization process?
• Does the test provider offer the genetic counseling?
• Does the test provider have adequate privacy policies, which is particularly important these days in light of the deCODEme bankruptcy and all the questions about ownership of data (and which was discussed in a prior blog post)?

This “Consumer Reports-like” aspect of AccessDNA is aimed at helping people evaluate their online, at-home genetic testing options.

Top it off with some support

Finally, AccessDNA helps individuals and their families find community, support resources, and genetic counseling services.  In AccessDNA’s vibrant and growing community, people can post discussions and questions related to genetic diseases, as well as ask a genetic counselor a direct question.  Affected individuals and their caregivers are often experts in their disorder, and by sharing their knowledge, they can help others who are searching for the resources they need in order to tackle life’s daily challenges.

Individuals can also find out how to schedule an appointment with a genetic counselor via the telephone or internet or find a genetic counselor in their own area using our zip code search.

As a “younger” genetic counselor, I have, at times, taken advantage of the NSGC and the educational opportunities it provides without really appreciating the value of the organization. I pay my yearly membership dues and am proud to be a member, but I have never truly advocated for the NSGC like they advocate for genetic counselor.

Therefore, here’s my petite homage to the NSGC…

The NSGC is “the leading voice, authority and advocate for the genetic counseling profession.”  Incorporated in 1979, the NSGC’s mission is to advance “various roles of genetic counselors in health care by fostering education, research, and public policy to ensure the availability of quality genetic services.”

• For information about the history of the NSGC, read “An Oral History of the National Society of Genetic Counselors” by Audrey Heimler.

The NSGC has come a long way in the last 30 years. It now boosts over 2,000 active members, hosts an annual conference attended by genetic counselors and other genetic professionals, and publishes position statements and a widely-read journal, The Journal of Genetic Counseling, which continue to shape the field of genetics. The NSGC has even embraced social media with their very own facebook group and twitter account (@NSGC_Org).

So stay tuned, because I will be blogging about the NSGC conference highlights this upcoming week.