The study involves minimal risks which are described in the consent form, however, you may experience one or more of the risks indicated below if you choose to be a part of this study.
Genetic information availability
There may be information obtained from the genetic testing that indicates that you, or potentially a family member (since we inherit genes from our parents, and pass genes on to our children) are at risk for a particular disease or condition. For example, genetic sequencing may indicate that an individual is more prone to develop certain types of cancer or other types of diseases, (e.g. Alzheimer’s or other inherited diseases).
There is a federal law called the Genetic Information Nondiscrimination Act (GINA). In general, this law makes it illegal for health insurance companies, group health plans and employers with greater than 15 employees to discriminate against you based on your genetic information (if someone were to identify that you participated in this study, for example). However, it does not protect you against discrimination by companies that sell life insurance, disability insurance or long term-care insurance.
Re-identification from a genetic sample
While the data developed for this study is being stored without traditional identifiers (stored only with coded ID numbers, no names), there may be ways of linking the genetic materials back to you. DNA does directly identify you (like a fingerprint), so it is possible that someone could look at the information in the DNA database and compare it to information in another database, and use that to identify you. This is difficult to do and we think is very unlikely to happen.
Breach of Confidentiality
One risk of participating in this study is that confidential information about you may be accidentally disclosed. We will use our best efforts to keep the information about you secure. Please see the confidentiality page for more information.