Nevertheless, the themes that emerged should be explored further. As the authors point out, while other studies of testing usually examine the testing experience and the individual's reactions during a follow-up period, life experiences before testing are also important. Although the interviewees knew that their risk factor was 50 percent, a number of them decided to believe that they had the gene in preference to constantly wondering whether they did or not. Five of them had engaged in risky behavior such as drinking, taking drugs, or getting in trouble with the law. All spoke about the impact of HD on their childhoods, coping with affected family members, learning how serious the disease was and coming to realize that they were at risk.
Following testing, they talked about how their lives had changed. Both gene positive and gene negative individuals discussed the ways in which they were able to move on with their lives. However, two of the young people who tested negative were struggling with the change in their identity. Having prepared themselves for testing results by seeing themselves as gene positive, it was hard for them to make the mental adjustment. No one expressed regret at having tested.
Jean Miller, patient advocate and an advisor to the NYA commented, "The results of this study reflect those feelings that the majority of the members from the HDSA National Youth Alliance [those still at-risk and those who have already tested either negative or positive], have expressed in the past six years since its existence. With so many young people in the US who are more aware, outspoken and open to discussing their feelings on living with HD in their life, I believe a larger study using the themes from this current study could and should be initiated."