Strategies for explaining genetics/genomics in consent documents used in H3Africa studies
| Defining genetics/ genomics | Common examples taken from the consent documents |
|---|---|
| Heredity (7 projects) | DNA is the code that you inherit from your parents and that you pass on to your children. This information may also be passed on from parent to child. This kind of information is passed from the father and the mother to their children and on to their grandchildren, in other words, from one generation to the next. |
| Heredity and health (3 projects) | Some illnesses are passed down in families because our DNA comes from our parents. To understand how inherited differences (traits that we get from our parents) influence our health. If an inherited change gives the person a health advantage, then people with that change will be more likely to survive and pass the change on to their children. |
| Genes and disease causation (5 projects) | Also, some, but not all, sicknesses can be caused by problems with DNA. Studying genes along with health information will help the researchers better understand what causes certain diseases. Aider à trouver le « gène » précis à l'origine du trouble médical dans votre famille (translation: Help to find the precise ‘gene’ that lies at the origin of the medical issues in your family’). We compare the DNA of the two groups so that we can see if there is any problem with the DNA causing the sicknesses. |
| Disease susceptibility and progression (3 projects) | To discover new genes, or new patterns in the way genes are used, that may help understand reasons for how quickly disease X progresses. Examine genes in people with disease X to help understand why some people develop their diseases faster than others. Some of these genes may prevent us from getting sick in the first place. Some other genes may be one of the reasons we get sick when others do not. Comment les changements au niveau du gène peuvent être responsables de vos symptômes (translation: How gene-level changes could be responsible for your symptoms). |
| Heredity and phenotype (physical traits) (4 projects) | These ‘genes’ are present in all of us and are what make people in families look like each other, but different from others. For example, some families are taller or shorter than others. The genetic material helps to decide for instance how tall you will be, what your body shape will be. This kind of information is passed from parents to children (which is why family members often look like each other). |