Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium
2. Materials and Methods
3.1. Dealing with Regulations Prohibiting Genetic Discrimination: Concerns of Direct Forms of Genetic Discrimination by Organisational Actors
I didn’t inform them [insurance companies]. Well actually I haven’t had to purchase insurance since I’ve known about it [her father’s diagnosis of HD and related to this her own chance of being a mutation carrier] so my insurance hasn’t changed. But I won’t tell them because I wouldn’t want to put myself at a disadvantage. […]
Researcher: and if you have to purchase a new insurance policy, what would you do?
I’ve no idea. That’s a good question. I’ve absolutely no idea what I should do. Would it be possible to conceal it?Melany [40, HD, not tested, asymptomatic]
Researcher: imagine that you want or need a new insurance policy, would you inform the insurance company about being a BRCA mutation carrier?
I think I would not mention it, but I’m afraid that’s not right.Lilian [53, BRCA2, tested, positive, symptomatic]
So I got a medical questionnaire with questions like ‘have you been in hospital lately?’ ‘do you have grandparents who … (hesitates)?’ Yes, I have a grandmother who got cancer at the age of 78. But that doesn’t seem to be very uncommon. It won’t give rise to any suspicions so I don’t think that I would have to pay a higher premium because of that. So that’s why it was a good moment to go for insurance. I wouldn’t have to lie on this form. So imagine you had all these checks [regular examinations or check-ups to make sure that she does not have cancer] and you have to declare it on this form and they say to you ‘well, your premium has now doubled’. That sucks.Ashley [23, BRCA2, tested, positive, asymptomatic]
Insurers can’t know about it [genetic information]. Well, they can’t know about it, but I think that there’s an uncontrollable area between not being allowed to know anything and knowing.John [62, BRCA1, tested, positive, asymptomatic]
I’ve heard others talk about problems with loans and stuff. People say ‘you’ll have less chance of being accepted or you have to pay a higher premium.’ But then they said, the people from the Huntington Liga said ‘well no, that’s not true. As long as you’re not ill and the doctor…’ (hesitates) Well, people are sometimes confused about this. There’s a huge difference between a positive genetic test and being ill. Not everyone knows that there’s a difference. […] But I think you have to be a very strong and confident person not to be deceived by insurers because their questions are often tricky questions.Ellie [31, HD, tested, positive, asymptomatic]
Then I thought ‘so this means I should in fact lie about it so as not to jeopardize my loan or insurance?’ In fact they oblige you to lie about it [the genetic information] because ‘they can’t use it anyway.’ And still you get questions like ‘do you have any health issues?’, ‘have you had any surgery in the last five years?’ in their medical questionnaires. Of course I had surgery in the last five years. Then they ask: ‘Why?’ What should I write then? ‘Preventive mastectomies?’ and then they say ‘we won’t take the genetic information into account.’? (astonished) That surgery tells them something about it [having an increased chance of breast cancer]. Then I think to myself ‘they will take this into account.’ You’re not telling me that they will simply ignore that.Jenny [41, BRCA1, tested, positive, asymptomatic]
3.2. Concerns about More Subtle and Indirect Forms of Genetic Discrimination
I won’t talk about my genetic risk if not doing so will prevent my career from being affected negatively.
Researcher: In what way do you think it could affect your career?
I think if (hesitates) I don’t think they’ll invest in me as much. If I (hesitates) if I tell them ‘ok well, my use-by date is in so many years’ they would be like ‘well, why would I invest in you when I know you’re not going to be able to work beyond this time when this other person…’ You know, we’re both at this level. ‘Your potential working life is so long and if this other person’s is longer then we will just invest in this person.’ Basically (hesitates) that’s my concern.Lizzy [28; HD, tested, positive, asymptomatic]
So before I informed people at work [about the HD mutation] I always used to be responsible for signing certain forms for the company. And then suddenly, after talking about HD, someone else was asked to do this instead of me. I was like ‘oh no! Would this have anything to do with my Huntington risk?’Chantal [45, HD, tested, positive, asymptomatic]
We [the family] were like ‘oh ok, it’s Huntington. Well, that’s why my father reacts so strangely. Or why he reacted so strangely at work. That’s why his colleagues…’ (hesitates) The employees who worked under my father still respected him but his direct colleagues, they (hesitates) well they actually bullied my father and eventually side-lined him. […] So that’s why I don’t talk about it either. If you say that your father has HD then they might immediately think ‘oh! She might have it too.’ Or people might look it up. And that’s difficult because, well I don’t want people to look at me like ‘could she already have it [HD]?’ And you don’t want that of course.Valerie [34, HD, tested, positive, asymptomatic]
Before I was genetically tested I actually always avoided talking about the disease. I’ve always wanted to live a normal life. At work no one knew. I wanted to live a normal life. I didn’t tell my children either. It took me a long time to finally talk with them about it. […] It was hard enough to carry this burden [knowing about the genetic disorder and the associated risk for herself and her relatives] with the people who knew about it. I didn’t want others to feel sorry for me. I didn’t want that label. I didn’t want to see that unhealthy curiosity that people have. I felt that people might label me, ‘oh! Really? I’m so sorry’ (hesitates). I immediately felt that they would think ‘that disease runs in families, your family is worth less’. That’s how it felt for me.Danielle [58, HD, tested, negative]
My aunt once gave a party for her 50th wedding anniversary. She contacted me to say that my brother [who had HD] was actually not welcome at the party because she did not want other guests to see him (hesitates). My cousin told me ‘If he [Danielle’s brother] is at the party, I won’t come because I don’t want to see him. I don’t want to see someone ill at the party.’
I was convinced that it [the news that her father had HD and she consequently was also at risk] would have a huge impact on my relationship. I was convinced that I would be labelled, ‘you‘d better choose someone else because you know the future which awaits you’.
Once I’ve become sick, people will look at me as ‘that sick person’. That’s very hard (cries). I’m not particularly concerned about issues like insurance or work but (hesitates) more ‘how will friends look at me?’ ‘how will they approach me once I’m sick?’ I once met a guy with HD and I didn’t really notice anything but still, I don’t want that. I’m afraid to be seen that way. But I do it myself to others too. I feel sorry. And I don’t want to feel that others would feel sorry for me (cries). So I waited very long to talk to my friends about it.Valerie [34, HD, tested, positive, asymptomatic]
Researcher: How would others react if you opted for PGD?
My best friend who has known the illness since I was young is very strongly Catholic. So she would be totally against abortion and totally against all that stuff. If she knew all about the procedure [what it entails to have PGD in combination with IVF] she might not be very (hesitates) in favor.Lizzy [28; HD, tested, positive, asymptomatic]
That’s [genetic discrimination by insurers] not the only thing I worry about. From a social viewpoint, I hope that people will not look at me as if I’m the next cancer case.Nora [38, BRCA2, tested, positive, asymptomatic]
I would never tell my bosses about it [being a BRCA2 mutation carrier]. It’s none of their business.
Researcher: Why not?
Because, it might not be an advantage for me if they knew. […] Other employees have time off work as well, for example for burnout, having a baby or breaking an arm. Most of this time off is unplanned. And I think that just because I know now that I might be absent for a while, doesn’t mean that I have to put myself in a situation like ‘hi, I’m the weak employee here.’ I even think that the preventive surgery will not mean that much time off work. Only if I’m diagnosed with cancer, then I might be unable to work for a long time. […] Not all employers might make an issue out of this but I just would not tell my bosses. If they had to choose between two equally qualified persons, then, in my head, they would probably choose the person without medical problems.Sophia [26, BRCA2, tested, positive, asymptomatic]
My husband and I have already been through a lot so I knew he would be able to tackle this issue with me. He wouldn’t make an issue out of it. But nowadays, a lot of young people don’t know what it [having a BRCA mutation] actually is and I think that when you’re not able to explain it [what it means to be a BRCA mutation carrier] (hesitates) I think a lot of them [potential partners for her children] would turn around and say ‘oh no, I don’t want this love relationship, I’ll look for another girl.’ They still have the chance, they are still free, they are still young, so why wouldn’t they?Jenny [41, BRCA1, tested, positive, asymptomatic]
I think that being at risk of HD might have an impact on love relationships. (hesitates) But I think it depends on when you tell your partner. When you’re settled and you’ve built a relationship, then you have I guess what we [she and her partner] had, ‘we’ll see what happens and we’ll go on with our lives.’ But if you keep it from your partner he might get angry. However, if you tell him at the beginning of a relationship I think it might play a role in whether or not the relationship succeeds. And that’s not blaming the partner. It’s not that simple [to be in a relationship with someone at risk of HD]. A partner needs to be very strong to be with someone who might get HD.Melany [40, HD, not tested, asymptomatic]
4. Discussion and Conclusions
Conflicts of Interest
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For this article, the use of ‘individuals at risk of a certain genetic disorder’ refers to individuals who have not undertaken genetic testing for a particular genetic disorder and are at risk because of their family history of disease, as well as individuals who have received a positive genetic test result. If it is necessary to point to a difference between these two groups, it will be explicitly mentioned.
For example, in the life insurance context six different approaches have been identified: (1) Fair limits approach; (2) human rights approach; (3) prohibitive approach; (4) moratorium approach; (5) rational discrimination approach; (6) status quo (Joly et al. 2010).
Female BRCA mutation carriers have a 50 to 80% risk of breast cancer and a 10 to 40% risk of ovarian cancer. Men with a positive test result for BRCA1 or BRCA2 also have a higher chance of getting cancer in the future, but the risks are less significant (Shiovitz and Korde 2015).
All participants signed a written informed consent. A few days after the interview, the first author contacted the participants again to respond to any additional questions or concerns. All interviews were anonymised. The study was approved by the Social-Medical Ethical Commission (SMEC) of the KU Leuven (File number G-2015 09 350).
Article 58 and article 61 are of relevance in the context of genetic discrimination. Article 58 of the Law on Insurance states that genetic information should not be disclosed by the insured person. Article 61 includes that medical investigations, which may be necessary to obtain an insurance contract, can only be based on the previous history of a current health status of an individual, and not on genetic research to determine future health status
Wet ter bestrijding van bepaalde vormen van discriminatie. 10 May 2007.
In combination with In-Vitro Fertilization, this technology enables couples to select embryos without a mutation in the HD or BRCA genes (Wu et al. 2014).
© 2018 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
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Wauters, A.; Van Hoyweghen, I. Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium. Laws 2018, 7, 17. https://doi.org/10.3390/laws7020017
Wauters A, Van Hoyweghen I. Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium. Laws. 2018; 7(2):17. https://doi.org/10.3390/laws7020017Chicago/Turabian Style
Wauters, Annet, and Ine Van Hoyweghen. 2018. "Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium" Laws 7, no. 2: 17. https://doi.org/10.3390/laws7020017