Scripps Genomic Health Initiative
FREQUENTLY ASKED QUESTIONS
What is the purpose of the Scripps Genomic Health Initiative (SGHI)?
The Scripps Genomic Health Initiative is a research study sponsored by the Scripps
Translational Science Institute, in partnership with Navigenics, Inc., Affymetrix, and
Microsoft Corp. It is a first of its kind research study to assess what actions people take
after learning more about their genetic susceptibility to disease, and if these actions can
lead to disease prevention or aid in early diagnosis. The data gained from the study will
also be de-identified and added in an anonymous form to the to the Scripps genomic
databank, a body of data that will continue to unravel the links between specific genes
and susceptibility to a variety of diseases and conditions.
What role would I play in the SGHI study?
Each participant in the SGHI study will receive a state-of-the-art scan of his or her
genome. The detailed genetic screening will assess individual genetic risk for more than
20 health conditions that might possibly be altered by lifestyle changes.
Lifestyle changes will then be tracked via each participant’s self-reported health
assessment questionnaires. These include a baseline assessment provided upon
enrollment in the study, subsequent assessments at three- and 12-month intervals, and
periodic assessments over a 20 year period.
How do you get my DNA sample?
The scan is based on DNA extracted from an individual’s saliva sample. Participants can
provide the sample by attending an SGHI scheduled collection event, or by using a home
collection kit. No blood is required to participate in this study.
What diseases are being looked at as part of the genetic screening?
The genetic scan screens for genes thought to increase the likelihood of developing:
Abdominal aneurysm
Atrial fibrillation
Breast cancer
Colon cancer
Glaucoma
Heart attack
Lupus
Multiple sclerosis
Osteoarthritis
Psoriasis
Rheumatoid arthritis
Type 2 diabetes
Alzheimer’s disease
Brain aneurysm
Celiac disease
Crohn’s disease
Graves’ disease
Lung cancer
Macular degeneration
Obesity
Prostate cancer
Restless leg syndrome
Stomach cancer
Where is the screening done?
The genetic analysis is conducted by Affymetrix, a government-certified laboratory that
captures data on 1.8 million genetic markers, and a cosponsor in the SGHI study.
How do I get the genetic results? Are the results private?
Genetic scan results with participant identification, as well as personalized risk
assessments, will be provided on a secure, encrypted, password-protected Navigenics
Web site and will be available only to the participant. Information also will be transferred
to each participant’s individual and secure Microsoft HealthVault account for personal
archiving.
What is Navigenics?
Navigenics is a privately held company based in Redwood Shores, Calif. The company
provides personalized, genetics-based health and wellness services to the public. As part
of the SGHI study, Navigenics will interpret information from the genetic scan and will
provide participants with an analysis of their predisposition for various health conditions.
The company also will provide information and guidance regarding what can be done to
help prevent, detect or diagnose these conditions.
What is a Microsoft HealthVault account?
This free service from Microsoft is a secure, password-protected, personal account that
allows users to house personal electronic medical data and health records for archiving
and future use. The data contained in your personal HealthVault account is accessible
only by you, but is available from any Internet capable computer.
What if other genetic breakthroughs are made after I have my scan?
Throughout the year, Navigenics will provide participants with ongoing, secure,
personalized risk assessments as new insights into genetic risk are made – adding new
condition predispositions, new genetic markers and other wellness strategies. This
Navigenics’ subscription begins at the point when results are provided and can be
annually renewed.
Is counseling available regarding my results?
Specialized genetic counseling is available through Navigenics at a rate of $50 per 30
minutes.
What are the qualifications to participate in the SGHI study?
Participation is open to as many as 10,000 Scripps Health employees, family members
and friends, age 18 and older. All participants must have a valid e-mail address and must
complete an individual informed consent form and detailed health assessment.
How do I enroll in the study and register for the genetic scan?
Enrollment runs from October through December and takes place online via a secure
Web site created exclusively for Scripps. Go to http://www.navigenics.com/scripps and
follow the provided instructions. You should allow for 40 to 60 minutes to complete
registration and your health assessment. Once enrolled, participants provide a personal
saliva sample either at a designated collection event or via a home collection kit.
When will my results be available?
Participants will be notified by e-mail in February 2009 when results are available.
Can my genetic information be used to analyze family ancestry?
Information on family ancestry and geographic origins will be reported in 2009.
What is my cost to participate in the study and receive my genetic scan and report?
Cost to Scripps employees and family is:
Through Nov. 7, 2008:
Nov. 8-30, 2008:
Dec. 1-31, 2008:
$150 per person
$200 per person
$250 per person
Friends of Scripps Health employees may also participate at a $100 additional cost.
What is the standard cost of this level of genetic scan?
The retail cost of a Navigenics genetic scan is $2,500. This cost has been significantly
reduced for Scripps employees, family members and friends through a partnership
between STSI, Navigenics, Inc., Affymetrix and Microsoft Corp.
What payment methods are available?
Payment is by credit card via the Navigenics secure Web site. Scripps employees may
also make personal payment via Scripps payroll deduction. Employees may not pay via
payroll deduction for family members or friends.
Who do I contact for even more information?
Visit the Navigenics enrollment Web site at www.navigenics.com/scripps or contact the
Scripps Genomic Health Initiative team at SGHI@scrippshealth.org. You can also
contact Navigenics Member Services at memberservice@navigenics.com or 866-5221585.