Learning any genetic information is something

Learning any genetic information is something check details you should share. It doesn’t affect only you. People need to overcome their spontaneous reaction of hiding something that is bad and share it. This

might make a difference in other people’s lives. They might have the opportunity to get tested, follow up even have a treatment. It is a moral obligation (Participant 03). A second important factor that was acknowledged by most participants was that this is an area in which knowledge and scientific understanding is constantly developing. This needs to be taken into account when making choices about the results that should be returned. The problem with genetics is that we think we know something today and then in a year’s time it is proven

wrong or insufficient. We can’t pretend we know everything because we don’t (Participant 02). Because everything changes so quickly we might have to consider keeping findings and returning them on a later time if we are not sure what they mean now (Participant 05). Third, there was a consensus among all experts that when using clinical sequencing, especially NGS, it is the interpretation of the results that is important, not the test itself. Anyone could buy the equipment for NGS but there are only a few who could interpret results. And there is the whole importance. Because we will get so many results, we will have a look and using specific AZD3965 software we will throw 1998 or 1999 out of 2000. The remaining ones we will see. We will have to think about them and consider the family as well (Participant 08).

Fourth, clinicians in particular also NADPH-cytochrome-c2 reductase suggested that genetic conditions differ in another important way: most genetic conditions are not actionable. For some conditions the only “action” that could be taken would be the option of prenatal or preimplantation diagnosis, if available, as no preventive measures were available. The problem is that for most genetic conditions there is nothing you can do! Only be informed, follow-up and help other make reproductive choices if you can (Participant 04). A patient with a hereditary genetic condition comes very close to his doctor. It’s not like having a respiratory condition that he could take two sprays [respiratory drug] and get well. Here you have many issues, social, psychological, moral (Participant 10). Fifth, returning genetic information to patients differs from returning other health-related information because learning genetic information has the potential to change someone’s life, especially if it is unexpected and serious. Many participants suggested that when conveying “bad news”, the support of a clinical psychologist would be vital. Especially if what you are going to tell them is really bad you need there a psychologist. They will know better how to help them (Participant 05). We had a psychologist at some point as a member of our group when disclosing such information. And that made a great difference.

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