..... Wtf. Ethics? Seriously? They talk about it in a very weird way. In the research community, what they are doing is absolutely unethical.
First, they gather and use very personal dna data as they like... They may have gotten rights to do it, but they are not disclosing the extends they are using this private information, they as misleading the population.
Second, it is COMPLETELY unethical to performe a test on someone, discover they have desease and not tell them because 'oh, it has no cure, so it would just be a bother to them'. No, this is wrong. Let's supose you have an incurable desease in your heart and you can die any minute without ever noticing... If a doctor finds out, they are obliged to tell you. This is an information pertaining to you, you have the rights to know it. If you are gonna say 'oh, but to tell a child...' fine, don't... but you have to tell the guardians of the child, and they are the ones to decide wether or not they should know. Also, this is not exclusive to the west, this is the norm.
So... this is just about the least ethical way to go about it and I'm very appalled by it.