Personalized & Data Driven Genomics

Your personalized risk profile will provide you with information about both your genetic risk and your behavioral/environmental risk. We know that both genes and environments are critical in why some people are more at risk of developing problems than others. Importantly, neither determines whether you will develop problems, so by learning about your risk profile you can take steps to support your health and wellbeing and reduce the likelihood that you will ever experience challenges. When you complete the CARES survey we will also let you know if your current levels of use indicate that you are using in ways that may be hazardous to your health and connect you to resources you can access immediately if you so choose. 

The survey consists of about 40 questions that ask all about you – your current and past substance use, childhood and family experiences. It takes most people about 15-20 minutes to complete.

No. This is not a diagnostic test. Instead, we will provide you with your risk profile, meaning that we will compare your responses to data collected from tens of thousands of individuals followed over time in research studies, and tell you what proportion of people in those studies who had risk profiles that match yours, went on to develop problems. This will give you an idea of your level of risk, and what factors contribute to your risk. But here’s the key piece: just because you are at elevated risk does not mean you are destined to develop problems. By understanding your risk factors, you can take steps to reduce risk. After you access your risk information, we will provide evidence-based resources to help promote your well-being, reduce the chance that you will ever develop problems, and support you if you are experiencing challenges. We recommend watching this short video about how genes and environments come together to impact your risk for addiction and other mental health challenges before completing CARES.

We will ship a saliva collection kit to you. The kit contains instructions about providing your saliva sample, but basically you just spit into a tube, seal it up, and send it back to us through the mail in a prepaid envelope!

Being at elevated risk does not mean you are destined to develop problems. By understanding your risk profile, you can take steps to avoid experiencing problems. We will explain what factors contribute to your higher risk level and connect you with evidence-based resources to support your health and well-being.

Your results are never connected to your name. When you create a login for CARES, you are assigned a random ID number. That number is the only thing connected to your survey results and your DNA sample. Only the research team has access to the “key” that connects names and ID numbers, and it is kept separate from the survey and DNA results, on a secure server.

No! Being at lower risk than the average person does not mean that you can never develop problems. Using substances like alcohol or other drugs frequently or in large quantities will always adversely impact health and increase the likelihood that you will develop problems. Being at lower risk simply means that based on the factors we have measured that can lead to elevated rates of problems, you have fewer of them at this time.

It’s important to remember that this is not a diagnostic test. We will provide you with your risk profile, meaning we will help you understand how many risk factors you carry – genetic, behavioral, and environmental — that put you at elevated risk of developing problems with addiction.  We compare your results to data from nearly 50,000 individuals that have participated in research studies that collected data across development. The survey consists of the items that research has shown to be most predictive of who goes on to develop problems.

Your genetic risk score is based on a study led by Dr. Dick, the developer of CARES, in which data from nearly 1.5 million individuals was used to find genes involved in addiction and other outcomes related to self-regulation, like ADHD and risk-taking behavior. This study identified hundreds of genetic variants associated with addiction and self-regulation. To create your genetic risk score, we sum up the variants that are associated with increased risky outcomes, and weight them by their effect size, to create a polygenic risk score. Your genetic risk estimate is calculated by tallying how many of these risk-increasing variants you carry. These genetic scores account for about 10% of the variability in how likely people are to engage in risk-taking and substance use behaviors when tested in independent samples, making it the most predictive genetic risk score for any behavior to date. But it’s important to note that these genetic scores only account for 10% of the variability in why some people are more likely to develop problems; that means that most of the differences in people’s outcomes are still influenced by other genes we haven’t yet found, and by environmental factors. Genes will never be the full story. That’s why your addiction risk profile will provide you with information about your genetic and behavioral/environmental risk.

This video, created by Dr. Dick and Dr. Austin, the genetic counselor who opened the world’s first psychiatric genetics counseling clinic, explains more about how our genes and environments come together to influence our behavior and life outcomes.

The language used in the CARES survey and to explain the personalized feedback is written at a high school reading level and is intended to be user-friendly and easily understandable. It was developed in collaboration with the world’s leading psychiatric geneticist, Dr. Jehannine Austin. The platform is intended for independent use by individuals 18 years of age and older.  There is nothing magic about being 18 years of age, but the platform does provide genetic feedback, and there are important ethical considerations surrounding the provision of genetic information to individuals who are minors. We want to ensure that individuals understand their risk profiles and, critically, that they understand that genetic risk, just like environmental risk, does not destine anyone to develop problems.

You will receive your comprehensive risk profile in approximately 8 weeks.  After purchasing CARES, you will have immediate access to the on-line portal to complete your behavioral/environmental survey, and you will receive immediate feedback and referral information if you are using substances in ways that may be adversely affecting your health. Once you complete the survey, we will mail a DNA (saliva) collection kit to your home. After you return your kit, our team will send your sample to the laboratory for DNA extraction (meaning they have to pull the DNA out of your saliva sample) and then sequencing millions of locations across your genome. From that information, we create your genetic risk scores, integrate that information with your behavioral/environmental survey data, and alert you that your addiction risk profile is ready. You will receive an email/text (depending on your indicated preference) from us prompting you to log back into the on-line portal when your results are ready.

If you’re a parent who wants to engage your child in meaningful conversations about substance use and addiction that’s wonderful! Engaged, supportive parents can reduce kids’ risk of developing problems. CARES may be a tool to help some families structure those conversations and provide meaningful risk information for adolescents who are mature enough to process the material.  We believe that parents are best positioned to gauge whether their adolescent is ready to understand the material and how to use the information to support their health and wellbeing.

Before starting the program, we recommend that you and your adolescent watch the following video together and discuss.  Parents should feel confident that their teenager understands the material and wants to participate.  Participation in CARES should never be initiated without full commitment, interest, and enthusiasm on the part of the adolescent.

If a parent purchases CARES for their teenager, they will be prompted to confirm that they have discussed the program with their adolescent and to enter their child’s contact information. The adolescent will receive an email with information about how to complete the program. The survey and DNA sample collection should be completed independently by the adolescent. Both the parent and adolescent will be notified when results are available.

We do not recommend the platform for anyone younger than high school (approximately 14- 15 years of age). If you have a younger child, here are free resources to support you in having conversations with your child about substance use (have some kind of attractive links to the below): 

• https://www.danielledick.com/resources#addiction
• https://drugfree.org/wp-content/uploads/2021/10/A-Parents-Guide-to-Raising-Resilient-Kids-10.2021-FINAL.pdf
• https://www.operationparent.org/webinars
• https://www.hazeldenbettyford.org/articles/talk-about-addiction-with-students 

Absolutely not! Your de-identified data will be used for research purposes to continue to improve the accuracy of the addiction risk profiles, but your data will never be connected to your name or contact information. We will only use your data for research; we will never sell your information to insurance or pharmaceutical companies.