NOTE: This is the update link as of April 15, 2019: https://redcap.vcu.edu/surveys/?s=MJNA4FLD9X
Introduction. National surveys have given us with valuable information about rates of alcohol and other drug use, abuse and dependence. Much of what we know about addiction, however, has come from information obtained from men and women entering inpatient or outpatient treatment for their substance use problems. While such information is important, it represents only one segment of the much larger group of people with addictions. Many such individuals have never been admitted to a substance abuse treatment program nor have they participated in any kind of addiction recovery support group (White et al., 2013).
In research, this restricted focus on the substance abuse treatment community has been accompanied by an equally narrow definition of treatment “success”, which in many cases has been measured solely by whether a person has relapsed to drinking/drug use or they have remained abstinent. Similarly, epidemiological studies of substance use disorders (SUD) have looked predominantly at remission, examining how many individuals with a lifetime diagnosis of SUD do not meet those criteria for the past year (White et al., 2013). For alcohol use disorders (AUDs) in adults, such remission rates have ranged from 5.3% to 12.9% (Dawson at al. 2008, as cited in White, 2011, p.26)
A recent national survey by the Partnership at Drugfree.org and the New York State Office of Alcoholism and Substance Abuse Services (OASAS) estimates that >24 million adults in the USA are in recovery from SUDs (White et al., 2013). Their study affirmed how little is known about the demographic, medical and psychosocial characteristics of this larger population of people with addictions.
Faces & Voices of Recovery recognizes there are many paths to recovery, ranging from self-help to formal treatment and it has embraced people with all types of recovery experiences (Laudet, 2011). The organization has been instrumental in spearheading change in how the general public views people with addiction and what constitutes recovery. Their efforts have also had an impact on the research community, with greater recognition of how important it is to include this broader recovery group in future studies.
Our research team at Virginia Commonwealth University (VCU) in Richmond, VA, hopes to contribute to this effort by making sure members of Faces & Voices of Recovery and the larger community can, if interested, participate in our study of “Genes, Addiction and Personality” (GAP). The study seeks to better understand genetic and environmental influences in individuals with alcohol and other drug use disorders.
Background. As you probably know, alcohol and drug addiction tend to “run in families”. Researchers, including members of our VCU team, have tried for decades to better understand why this happens. This is difficult, because families share both common genes and common environmental experiences that can contribute to familial clustering. To tease them apart, we have used such strategies as twin and adoption studies. Taken together, such studies have found that for alcohol, genetic factors (those passed down from parent to child through DNA), account for about half of the risk for developing an Alcohol Use Disorder (AUD). Environmental circumstances, both within and outside the family, account for the remaining risk.
More recently, with advances in human genetics, researchers have undertaken projects aimed at identifying which genes influence risk. This has been no small task, because for alcohol and other substance use disorders, we know that hundreds or even thousands of genetic variants are likely to play a role in the risk for developing the disorder. Each of these variants contributes only incrementally to risk, with the environment also playing a key role in the process. Environmental factors can not only increase the chances people NOT at high genetic risk might develop AUD, it can also be protective among those who ARE at high genetic risk. For example, if an individual is never exposed to alcohol due to local laws prohibiting its purchase, they will not develop problems with alcohol, even if they have many of the genetic risk variants.
To complicate things further, the symptoms of addiction differ a lot across individuals with the disorder. The new DSM-5 diagnosis of AUD describes 11 symptoms that range from craving to loss of control to problems at work/school to physical withdrawal. Two people can receive a diagnosis of AUD with no overlap in their symptoms. This variability and diversity has been a focus of more recent research: might genetic factors impact which symptoms a person exhibits? More importantly, if there are such genetic differences, what can we learn about them that might improve prevention, intervention, and treatment?
The impetus for the GAP study came from recent schizophrenia research. Schizophrenia is another condition that is influenced by many genetic variants of small effect (Levinson et al., 2011). Recent research has provided valuable insight for researchers trying to understand the genetic basis of schizophrenia. This research only became possible after survey data and saliva samples for DNA analysis were obtained from over 30,000 people with schizophrenia. With this large sample, the results have been promising, with scientists reporting they had identified over 100 genomic regions that impact risk for schizophrenia. Many researchers believe data from this research is likely to inform the field about new ways to assess for schizophrenia risk as well as develop novel and more effective treatment options.
Our research team at VCU received funding from the National Institute on Alcohol Abuse and Alcoholism (NIAAA) to undertake the same type of study focused on individuals with addiction. Our goal is to better understand genetic and environmental influences in Alcohol Use Disorders. Based on pilot data we collected over the past 2-3 years, we hope to recruit 12,000 individuals with a history of AUD who are willing to complete a brief survey and provide a DNA sample which is central to such research.
We wrote this blog because we think it is very important to have the broader recovery community participating in the research from the very beginning. To help us meet this goal, Faces & Voices of Recovery has agreed to post several links to the GAP study. Those clicking on the link will be taken to a site where they can get additional information about the project. If they qualify for the study, they can then decide if they want to participate. Participation involves completing a 15-20 minute on-line survey and then providing a saliva sample (kit sent through the mail) for DNA. Once the survey and saliva samples are received, participants will receive a $5 gift card for their time and effort. No identifying information will be linked to the data, but with your permission we will maintain your contact information in case you are interested in participating in future studies.
This is an exciting time in the field of addiction, and the VCU research team is committed to conducting the study. But we can’t make progress without the involvement of individuals entering treatment and members of the recovery community who have struggled with AUD; either now or in the past. If you would like to see if you qualify for the GAP study, please click on the link below. This will take you through a short series of questions to see if you are eligible for the study. If you are, you’ll be given additional information about the research before starting the survey. If you have questions, you can contact GAP2online@vcu.edu.
This link is active for data collection starting on February 21, 2019. If you have previously participated in the GAP study, please do not take the survey again.
Click to see if you qualify for the GAP Study: https://redcap.vcu.edu/surveys/?s=HJFDXW979A
We hope that you will join us in this effort to learn more about AUD, with a common goal of improving the lives of those impacted by the disorder and their family members. We also hope the project will provide information helpful to Faces & Voices of Recovery and other organizations committed to advocating and educating federal agencies, policy makers and clinicians as well as the lay public about people with addictions and their long-term recovery.
Dace Svikis, PhD, and Kenneth Kendler, MD
Principal Investigators of the GAP Online Survey