Plain English summary
Background
Methods
Study setting - Melbourne IVF donor program
Participants
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had used received IVF treatment at Melbourne IVF using donor gametes or embryos between 2012 and 2014
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were not currently pregnant or undergoing IVF treatment
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had not used a genetically related person as a donor
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could speak English.
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had donated between 2012 and 2014
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had not donated to a genetic relative
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could speak English.
Methodology
Interviews
Areas to address | ||
---|---|---|
Domain | Donors | Recipients |
Introduction | − Why the participant became a gamete or embryo donor | − Why the participant(s) required a gamete or embryo donor |
Expectations about information | − Expectations of donor program − What information donors thought they would provide to potential recipients | − Expectations of recipient program − What information the recipients thought would be provided about potential donors |
Experience of program regarding genetic information (obtained from the donor Genetic Health Questionnaire) | − Thoughts after seeing questionnaires − Unexpected information required − Donors experience with the questionnaires − How the donors thought the information would be used by recipients | − Thoughts after seeing completed questionnaires − Unexpected information given − More/less information than previously thought − How recipients used the donor information |
Importance of genetic information | − What information donors thought would be most important to recipients − Medical − Genetic − Personal attributes | − What information was the most important to recipients and why − Medical − Genetic − Personal attributes − Did this remain consistent throughout the recipient process |
Attitudes towards genetic information | − Thoughts on need for genetic information about donor − Options of further genetic screening − Personal and family implications | − Thoughts on need for genetic information about potential donors − Options for further genetic screening |
Any other information required | − Any other information donors feel could have been provided to recipients | − Any other information recipients feel could have been provided about potential donors |
Analysis
Ethics committee approval
Results
Response
Recipients
Donors
Participants (pseudonyms) | Donation | Relationship status |
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Recipients
| ||
Cathy | Sperm | Different sex |
Leonie and Cassie | Sperm | Same sex |
Katrina | Sperm | Different sex |
Anne | Egg | Different sex |
Charlotte | Egg | Different sex |
Lucy | Egg | Different sex |
Jane | Embryo | Single |
Kate | Embryo | Different sex |
Dianna and Luke | Embryo | Different sex |
Donors
| ||
Anthony | Sperm | |
Ethan | Sperm | |
Euan | Sperm | |
Paige | Egg | |
Charlotte | Egg | |
Becky | Egg | |
Paula | Embryo | |
Naomi | Embryo | |
Lorna | Embryo |
Recipient themes
“Oh yeah, definitely, if you didn’t know that then it is this world wide of unknown of what might happen in your child’s future it’s definitely something important that you need to know that” -Cathy, sperm recipient.
“The donor program is wonderful because it normalises that you need to look for that so it could feel quite intrusive like you are willing to give me a gift and now I’m going to give you the third degree and what’s your health like”-Anne, egg recipient.
“Yeah, it definitely impacted I think from what we saw on the form, it sort of helped us narrow it down to another couple of donors”-Leonie, sperm recipient.
“I guess whilst all the genetic information was kind of necessary the other side [non genetic information] was far more important”-Cassie, sperm recipient.
“I was reasonably comfortable to take that risk and I think also 20 or 30 years down the track hopefully something would have come up”-Jane, embryo recipient.
“When you meet someone …you don’t sort of ask all the genetic information”-Leonie, sperm recipient.
“There was a letter saying that there is an increased chance that she could develop hearing loss, but we went with it because we thought well you know these days they do a lot with hearing”-Cathy, sperm recipient.
“The chances of getting someone with a perfectly clean medical history is just negligible we are all going to die from something whether it be a stroke, cancer, heart disease, so let’s face it, when you put it on paper and it looks scary but that is the reality for all of us”-Jane, embryo recipient.
“For me I was happy with the knowledge that I had”-Anne, egg recipient.
“I actually found that to be very, very, very reassuring”-Cassie, sperm recipient.
“It reassured me because it meant that the medical team had looked at it and reviewed it and had given me their opinions and percentages so I could make an informed decision”-Charlotte, egg recipient.
“You know what was really good? Even though I hadn't thought of those things, I’m glad the questionnaire was there”-Lucy, egg recipient.
“But yeah I certainly think the more information the better”-Jane, embryo recipient.
“You don’t want to have information overload I think”-Lucy, egg recipient.
“It is a really hard one to know whether we would really have wanted more information”-Kate, embryo recipient.
“So it’s not as important to me, but I think the option should be there”-Charlotte, egg recipient.
“If you had more information it would be positive not only from the selection point of view but from a management point of view in the future”-Jane, embryo recipient.
“It would have given me pause for thought just because it kind of…it sounds very much like it’s starting to create designer babies”-Charlotte, egg recipient.
“You know it is what it is, you know, so it is the risk you take even if you are having your own children you don’t know what is going to come”-Kate, embryo recipient.
“I think that if we looked into it too much it might stop me from wanting a child”-Katrina, sperm recipient.
“For me if it was uncertain I would rather not know… and then it’s not in the back of your head and you don’t worry about it”-Cathy, sperm recipient.
“I don’t think there is anything wrong with the information we have now so if I had the choice of more chance of a donor and less information or more information and less chance of a donor I would probably go with the information that I have now which is the current information and an increased number of donors”-Lucy, egg recipient.
“And then making a donor go through genetic screening because then…say by the way you have made the offer but I want you to go get screened”-Charlotte, egg recipient.
“I’m not genetically screening myself, why would I do that to someone else?”-Charlotte, egg recipient.
Donor themes
“I was surprised that I then had to provide a lot more information about that, when…it was in relation to a family member and not in relation to me” -Euan, sperm donor.
“I found it good and I found it hard and sometimes you don’t take notice of what happens in your grandparents or you know what I mean”-Paige, egg donor.
“And it makes you think about things you do hear, whether they are genetic, and you feel, should I write this down, or shouldn’t I…”-Naomi, embryo donor.
“Personally I don’t see the relevance in it”-Becky, egg donor.
“Well, I don’t have an issue with it. It’s safer to know if you have an issue and to not donate, than to accidently pass on a genetic disease”-Charlotte, egg donor.
“There is always that thing of ah discovering stuff you don’t know about…that can be both good and bad at the same time”-Anthony, sperm donor.
“I mean I felt like they were trying to create a super human or something... It is a little off putting, that children, that people are selecting their children”-Euan, sperm donor.
“If it was me and the child was in my house, I would be providing the growing situation and buying the books, so I can influence what that person says more than their sperm donor”-Ethan, sperm donor.
“…and the scary thing is then we can choose…choose what sort of babies we are going to have and that’s scary to me”-Becky, egg donor.
“Um, it would have given me pause for thought just because it kind of…it sounds very much like it’s starting to create designer babies”-Charlotte, egg donor.
“When you find out that your children have predispositions to illnesses and maybe if you don’t know it could be…I don’t know if it’s good to know that much…”-Naomi, embryo donor.
“I don’t think I would want those results personally but I don’t mind if other people have those results or that it’s tested for”-Ethan, sperm donor.
“But, then the scientists are going to know this information about me”-Becky, egg donor.
“There would be things that you would need to draw the line somewhere, things that are controllable and things that aren’t controllable, to not create a society which is too bound by perfecting itself”-Charlotte, egg donor.
“I think less people would [want to donate]. I mean…um…we all have a little something in our closet that we don’t want to share with others”-Becky, egg donor.