Table 1 Descriptions of NMASF and methods of disclosure of results in NCGENES

From: Factors influencing NCGENES research participants’ requests for non–medically actionable secondary findings

Type

Description of risk

Examples

The result you are most likely to learn

Medical management

How to learn results

A

Common diseases

Typical forms of heart disease, cancer, and diabetes

Average or slightly different risk compared with the general population

Routine recommendations such as eating right and getting exercise

Telephone

B

Differences in response to some medications

Response to the blood thinner, Coumadin

Average or slightly different risk compared with the general population

Possible change in the amount of medicine or avoidance of other medicine

Telephone

C

Carrier status

Cystic fibrosis, sickle cell anemia, many others

Everyone is expected to have 4–8 positive results

No personal health problems

One in-person visit

D

Common form of Alzheimer disease

Typical form of Alzheimer disease

Average or slightly different risk compared with the general population

Routine recommendations such as eating right and getting exercise

One in-person visit

E

Rare genetic diseases

Adult polycystic kidney disease, factor V Leiden; many others

Normal

For some conditions, some symptoms can be treated

One in-person visit

F

Rare, severe, progressive diseases of the brain and nervous system

Lou Gehrig disease (ALS); others

Normal

No prevention; no treatment

Two in-person visits

  1. ALS amyotrophic lateral sclerosis, NCGENES North Carolina Clinical Genomic Evaluation by Next Generation Exome Sequencing project, NMASF non–medically actionable secondary findings.