Table 4 Sentences commonly highlighted as concerning^a

WHAT WILL YOU ASK ME TO DO?

We will get some information from your medical records.

  We will use your medical records from time to time to update this information.

If you agree, we may get information from your mobile health tracker.^*

WHAT WILL YOU DO WITH MY SAMPLE AND INFORMATION?

Researchers will have two ways to access the stored materials.

  We will put some information in a public database that anyone can look at.

WHAT ARE THE RISKS AND HOW WILL I BE PROTECTED?

Someone could identify you.

  Your medical records contain information about you and your health. Now or in the future, they could have information you find sensitive.

  Your mobile tracker can give clues about your health and lifestyle (such as your activity level), as well as your location.

  [T]here is a risk that someone without permission could get access to the data we have stored about you. Even without identifiers, there is a chance someone could trace it back to you by linking all the data together.

The stored materials could be used for studies you do not like.^*

Your sample and information could be of interest for reasons other than research.^*

  Because your materials give information about you and your health, they could be of interest to employers, insurers, law enforcement, and others.

  [There are federal laws that protect you from some types of discrimination.] For example, it is illegal for health insurance companies and group health plans to discriminate against people based on genetic information or health conditions. These laws do not protect against discrimination in life insurance, disability insurance, or long-term care insurance.

  Federal laws also make it illegal for most employers to use your genetic information against you. But they do not apply to companies with fewer than 15 employees.

  Your data could be of interest to law enforcement or in a legal case that comes up in your own life. There are federal laws that require us to refuse to give out information that identifies you, even if ordered to by a court or judge, without your okay.

[Concluding paragraphs of Risks & Protections section]

  Politicians could change the laws.

WILL I GET THE RESULTS OF STUDIES ON MY SAMPLE AND INFORMATION?

Getting results may affect your privacy risks.^*

  [We will not give information to insurance companies.] But for some insurance (such as long-term care, life, and disability), companies can ask if you have genetic information about yourself or look for it in your medical record. This could hurt your chances to get or keep these types of insurance.