Introduction, consent and eligibility We are researchers in the Institute for Public Health Genetics at the University of Washington conducting a study of attitudes towards embryo donation in the online infertility, donor-conception and direct-to-consumer genetic testing communities. The goal of this project is to understand the types of embryo donation arrangements and how they are viewed, factors that are important in decision-making about cryopreserved embryos, as well as to document the stability of donation arrangements over time. This is an area that has not been previously studied, so survey responses provided will provide better understanding to the scientific and medical communities about how embryo donation is conducted as well as how ethical issues around embryo donation are perceived. We are looking for any adults who are willing to take an anonymous survey on this topic . This survey hopes to capture (but is not limited to) embryo donors and recipients and their relatives: people with other backgrounds will be shown the subset of applicable questions. This survey should take approximately half an hour to complete. Participation is voluntary, and you may choose not to participate or to discontinue the survey at any time without penalty. There are no direct benefits to you for participating in this study. There is a chance you may find some questions frustrating, troubling or stressful. You can choose to skip questions or stop taking the survey. The survey responses you submit are collected by a secure online survey program and stored on a password-protected computer. As data breaches are always possible, we cannot ensure the complete confidentiality of your responses, however we will take all available measures to make sure your survey responses stay safe and secure. Because this survey is fully anonymous, there is no plan to contact participants with the outcome of the study, nor are we able to provide a copy of this consent information. If you wish to retain a copy of this page for your own records, you may print, save or screenshot it at this time. If you have any questions about the study, or if you feel you have been harmed by participating, you may contact Jennifer Gogarten, the head of the research team at gogarten@uw.edu . If you have complaints or questions about your rights as a research participant, contact the University of Washington Human Subjects Division at (206) 543-0098.
Are you an adult, age 18 or older?
* must provide value
Yes
No
Do you agree to voluntarily participate in this survey, and understand that you may skip or decline to answer questions?
* must provide value
Yes
No
Which of the following best describes your relationship to embryo donation?
* must provide value
I am an embryo donor (generated embryos which I did donate to research or another family)
I am prospective embryo donor (generated or anticipate generating embryos which I may donate to research or another family)
I have chosen not to donate embryos (have generated more embryos than originally intended to use for my own family building which I decided not to donate to research or another family)
I am an embryo recipient (have received embryos in order to build my family or attempt to do so in the future)
I am a prospective embryo recipient (considering using donor embryos to build my family)
I have chosen not to receive embryos (pursuing alternate family building strategies or living child-free)
I am an embryo recipient AND an embryo donor
I am an embryo recipient AND considering donation
I was conceived by embryo donation
my parents were involved in donating embryos
another family member or close friend is involved in embryo donation
I do not have any relationship to embryo donation
prefer not to answer
Do you have a different or additional relationship to donor conception? (Select all that apply.)
Do you have a personal connection to adoption? Note that this question is referring to adoption of infants or older children. (Select all that apply.)
With whom have you discussed potential plans to donate/receive embryos? (Select all that apply.)
If you saw a counselor/therapist specializing in embryo donation, assisted reproduction or donor conception, was it the result of guidance from any other parties? (Select the option that first prompted you to seek the counseling.)
no, something I undertook independently
yes, required by my infertility clinic
yes, recommended by my infertility clinic
yes, required by an agency
yes, recommended by an agency
yes, required by a lawyer making donation contracts
yes, recommended by a lawyer making donation contracts
prefer not to answer
Considering interactions with either a partner or other personal support network members, when was embryo donation first discussed as an option? (This includes as a donor or as a recipient.)
before the onset of infertility treatment
during the course of infertility treatments (e.g. as a stimulation was underway and was successful or unsuccessful, or after IVF with own gametes failed)
after infertility treatment had been completed (e.g. after a large number of embryos were frozen)
I am unsure of whether/when mention happened
I have not (yet/ever) discussed embryo donation with a partner or other member of my personal support network
prefer not to answer
Which of the following donation models did you discuss with a partner or other supportive people in your personal network, as a donor or as a recipient? Select all that apply. (Note that this includes any you talked about, even if it was to say that they were not options for you or that you disapproved.)
Which of the following embryo donation models were ones that you have seriously considered (as a donor or recipient)? Select all that apply.
Would you describe yourself and your partner as being on the same page about embryo donation planning (or planning to receive embryos)?
we easily agreed on decisions about whether and how to donate/receive embryos.
we have had minor differences of opinion about whether or how to donate/receive embryos but were able to resolve them without much stress.
we had big differences of opinion about whether or how to donate/receive embryos that were a strain on our relationship, though we were eventually able to come to a decision.
we are still in a stalemate about whether or how to donate/receive embryos at all.
we are still figuring out our plans but so far no major disagreements.
my partner has not been involved in decision making.
I do not have a partner.
prefer not to answer
When was embryo donation (as a donor or as a recipient) first brought up by your infertility treatment team?
before the onset of treatment (e.g. at consultation)
during the course of treatments (e.g. during cycle)
after a course of treatment had been completed
I am unsure of whether/when mention happened
members of my infertility treatment team never brought up embryo donation
prefer not to answer
Embryo donation models brought up by your infertility treatment team (such as reproductive endocrinologist, fertility doctor, IVF nurse, embryologist) included... (Select all that apply, as a donor or as a recipient.)
Which of the following are/were important considerations for your decisions around embryo donation (such as whether to donate and what type of donation)? Select all that apply.
Which of the following are/were important considerations for your decisions around receiving donor embryos (such as whether to receive embryos and through what type of donation)? Select all that apply.
Please specify the other factor(s) not listed in the previous question that were important to your embryo donation decisions (how and whether to donate/receive).
Which of the following personal circumstances led you to consider building your family by donor embryos? Select all that apply.
Please specify the other circumstances not listed in the previous question that led to you to consider building your family by donor embryos.
How many years has it been since your embryo donation (or receiving of embryos) took place? (If there has been more than one, please report the most recent.)
still in process of finalizing our donation arrangement
just finalized in the last few months
within the past year
1-2 years ago
3-5 years ago
6-10 years ago
11-15 years ago
16-20 years ago
21+ years ago
not sure
prefer not to answer
How do you feel about your embryo donation decisions (whether and how to donate/receive embryos)?
very positively: would do it exactly this way again
somewhat positively: there are some things I might change
neutral: no opinion either way
somewhat negatively: there are major elements of donation that I would do differently
very negatively: I would never make this donation decision again
prefer not to answer
If you donated embryos, how did you do so? (Select all that apply.)
* must provide value
How many times have you entered into embryo donation arrangements as either a donor or a recipient? (Note that if you have entered into multiple arrangements, you should answer the rest of this survey about the most recent one.)
1 2 3 4 5 6+ prefer not to answer
If you donated embryos to research, what motivated you to you choose this particular type of research? (Select all that apply.)
Please specify the other factor(s) not listed in the previous question that that motivated you to choose this particular type of research.
If you have donated or received embryos for family building, which of the following criteria were important to establish a match? (Select all that apply.)
On your road to becoming an embryo donor/recipient, did you have any failed matches, such as when you and another party initially agreed to a donation but it did not happen?
yes: once
yes: multiple times
no
prefer not to answer
If you had a failed match (or more), would you briefly describe the reason for failure?
If you received or donated embryos for family building, which best describes the nature of the relationship with the other party (donor/recipient)?
anonymous (you do not know each others' identity)
semi-open (you can communicate through a third party without knowing each others' identity)
open/known (you know each others identity and can communicate directly)
identity release was planned for the future (such as when a child turns 18)
relationship was established as anonymous but later we learned of each others' identities (becoming open/known)
relationship was established as anonymous but later we established communications through a third party and/or negotiated future identity-release
relationship was established as semi-open but later opened further
relationship was established as semi-open but later became more closed
relationship was established as open but has later become more closed
prefer not to answer
Can you describe briefly the circumstances that caused your donation's (or receiving of donor embryos) degree of openness to change over time?
If you received or donated embryos for family building, how was the match facilitated? (If you have participated in multiple embryo donation matches, please report the most recent one.)
being matched by the clinic at which the embryos were created
being matched by an independent embryo donation agency (such as Nightlight's Snowflakes Program, NEDC, or Embryo Donation International).
private matching through responses in a matching forum on a classified ad model (such as Miracles Waiting or NRFA)
private matching through responses to a posted profile in a social media matching group
private matching between people you got to know online through infertility or embryo donation social media support groups
private matching between people you previously knew as friends or family
another method other than the above
prefer not to answer
If your matching strategy was something other than the options in the previous description, please indicate it here.
How long was there communication, direct or indirect, between the donor/recipient units before you agreed to the match ?
there was no communication
a few days
a few weeks
several months
closer to a year
several years or more
prefer not to answer
Which of the following kinds of communication took place between donor(s) and recipient(s) prior to agreeing to a match ? (Select all that apply.)
Prior to agreeing to a match , who was involved in contact between donor/recipient units? (Select all that apply.)
What is the typical frequency of communication, direct or indirect, that you have had with the donor(s)/recipient(s) since a donation took place ? If it has been variable, choose which answer best represents the recent past.
no communication
daily
weekly
monthly
several times a year
annually
more infrequently than once a year
prefer not to answer
Since donating , which of the following kinds of communication took place between donor(s) and recipient(s)? (Select all that apply.)
Since donating , who has been involved in contact between donor/recipient units? (Select all that apply.)
Approximately how often do you think of the donor/recipient family? Think about the period that represents the recent past and current state.
daily or more often
a few times a week
a few times a month
a few times a year or more infrequently
do not think of them at all
prefer not to answer
Approximately how often do you think of the decision to donate to research? Think about the period that represents the recent past and current state.
daily or more often
a few times a week
a few times a month
a few times a year or more infrequently
do not think of it at all
prefer not to answer
Approximately how often do you think of the decision not to donate your embryos? Think about the period that represents the recent past and current state.
daily or more often
a few times a week
a few times a month
a few times a year or more infrequently
do not think of it at all
prefer not to answer
As someone who chose not to donate, what alternative did you end up selecting?
continued cryopreservation (freezing long term)
disposal in medical waste
taking home for burial or other personal disposal by family
embryos were made into a keepsake memento such as jewelry
"compassionate transfer" disposal by transfer to the vagina
FET cycle(s) with our clinic to potentially grow my/our family further
a transfer to the uterus at a time not specifically planned to result in pregnancy
still undecided about specific plan for non-donation
not sure
prefer not to answer
How do you feel about the specific alternative to donation you chose?
positively
neutral
negatively
conflicted: it seems like the best possible decision but I struggle with it
prefer not to answer
As someone who chose continued cryopreservation, which of the following strategies did you take?
continuing to pay for storage at the clinic at which the embryos originated
continuing to pay for storage at the clinic where the embryos originated although the rates have increased (noticeably) over time
no longer paying for storage at the clinic where my/our embryos remain, leaving it up to clinic to decide whether to discard or not
moved embryos to a long term storage facility
prefer not to answer
Does (or did) paying for embryo storage pose a financial hardship?
yes
somewhat
no
prefer not to answer
What was the outcome of the embryo donation arrangement you entered into?
child(ren) were born from the donation
no children born yet but a pregnancy is underway
no children born yet but we're waiting to see if a pregnancy took
no children born yet but there are embryos still cryopreserved to continue treatment
no children resulted from the donation (because treatment cycle(s) did not establish pregnancy or ended in miscarriage)
don't know what outcome of donation was
prefer not to answer
What best characterizes how you view your post-donation relationship with the donor/recipient family?
emotionally close (like good friends and/or extended family)
cordial acquaintances with positive interactions
emotionally strained or sometimes challenging acquaintanceship
a dysfunctional relationship which may be close at times but is turbulent and difficult
do not have a relationship at all
prefer not to answer
Which of the following was most important in your initial selection of anonymity in embryo donation?
personal preference for this model (such as greater emotional comfort, privacy for my children)
because it was the only thing offered in my clinic even though we would have preferred a different model (e.g. greater openness or identity release)
because I/we did not know that there were alternatives at the time
prefer not to answer
Were the embryos you donated, are considering donating or chose NOT to donate...
genetically related to both me and my partner
conceived using a sperm donor I/we chose
conceived using an egg donor I/we chose
conceived by double egg and sperm donation
donated to us by other embryo donors
prefer not to answer
Was genetic testing done on any of your embryos?
yes: PGD for a particular genetic disease
yes: PGS for chromosomal viability
yes: PGS to select gender
no
unsure
prefer not to answer
Which embryo donation alternatives did your infertility treatment team bring up for discussion? (Select all that apply.)
Do you feel that the education provided by the infertility treatment team on embryo donation options and alternatives was adequate?
yes: discussions fully prepared me/us for making embryo donation decisions and the likelihood that I/we would need to do so
okay: the topic was mentioned but the lack of depth to discussion left me/us unprepared for the emotional reality of making decisions about excess embryos
no: it was in the paperwork signed but I/we were not at all prepared to make decisions
no: that I/we had embryos to make donation decisions about came as a total surprise
prefer not to answer
Which would you consider the best model for embryo recipients discussing embryo donation with their children?
telling children about their family's relationship to embryo donation as early as possible (so they grow up always having known)
telling children about their family's relationship to embryo donation once they are old enough to understand
telling children about their family's relationship to embryo donation once they are adults
telling children about their family's relationship to embryo donation only when they ask questions about their origins
telling children about their family's relationship to embryo donation only when genetic inconsistencies or connections are found (e.g. direct-to-consumer genetic testing)
telling only the embryo-donation-conceived children but not any other children in the home
not telling their children about their family's relationship to embryo donation at all
prefer not to answer
Which would you consider the best model for embryo donors discussing embryo donation with their own children (i.e. the genetic siblings of the donated embryos)?
telling children about their family's relationship to embryo donation as early as possible
telling children about their family's relationship to embryo donation once they are old enough to understand
telling children about their family's relationship to embryo donation once they are adults
telling children about their family's relationship to embryo donation only when genetic connections are found (e.g. direct-to-consumer genetic testing)
not telling the genetic siblings of donated embryos about their family's relationship to embryo donation at all
prefer not to answer
Which of the following do you regard as the best model for discussing embryo donation with other family members (such as the donor's or recipient's own parents)?
telling other relatives about their family's relationship to embryo donation as early as possible
telling other relatives about their family's relationship to embryo donation once the resulting children have been born / reach a certain age
telling other relatives about their family's relationship to embryo donation only when they ask questions about the child's origins
telling other relatives about their family's relationship to embryo donation only when genetic inconsistencies or connections are found (e.g. direct-to-consumer genetic testing)
telling other relatives only if they have a genetic relationship to the embryos being donated (i.e. not telling relatives of recipients, but telling relatives of donors)
not telling other relatives about their family's relationship to embryo donation at all
prefer not to answer
Which of the following do you believe represents the best situation for children whose parents were involved in embryo donation for family building?
growing up always knowing all their genetic relatives
being able to obtain the identity of genetic relatives (with ability to contact) whenever they choose
getting to know identity of genetic relatives (with ability to contact) upon turning 18
being able to reach out to relatives through opt-in relative-finders on direct-to-consumer genetic testing services or donor sibling registries
remaining fully anonymous
answer varies for children resulting from embryo donation versus other children of donors
prefer not to answer
Have you done direct-to-consumer genetic testing (such as ancestryDNA or 23andme)? Select all that apply.
Which of the following uses of direct-to-consumer genetic testing do you find ethical for embryo recipient parents to conduct on their donor-embryo-conceived child (when their child is a minor)? (Select all that apply.)
Which of the following uses of direct-to-consumer genetic testing do you find ethical for embryo-donation-conceived individuals to conduct as adults? (Select all that apply.)
Which of the following uses of direct-to-consumer genetic testing do you find ethical among embryo donors and their family members? (Select all that apply.)
When it comes to using direct-to-consumer testing to identify genetic relatives in embryo donation, to what extent should anonymity stipulated in donation contracts be considered?
a contract that stipulates anonymity should be always honored, not only by those who signed it but also by future generations
a contract that stipulates anonymity should be honored only by the people who signed it (the donors and recipients), but does not apply to decisions made by a donor-conceived-person
the promise of anonymity is unrealistic in the age of direct-to-consumer genetic testing, making any contract promises of anonymity obsolete
direct-to-consumer testing to identify and contact relatives is ethically imperative to overcome barriers of anonymity imposed by contracts
prefer not to answer
Do you prefer the use of the term "embryo donation" or "embryo adoption" to refer to situations involving giving embryos from one family to another for family building?
embryo donation
embryo adoption
I have no preference or use both interchangeably
I use both to describe different kinds of arrangements
prefer not to answer
How does the responsibility of embryo recipients to disclose their child's origins to their child compare to that of parents who adopted an infant/child?
embryo recipients have lesser responsibility
embryo recipients have the same responsibility
embryo recipients have greater responsibility
prefer not to answer
How does the responsibility of embryo recipients to disclose their child's origins to the outside world (such as friends, teachers) compare to that of parents who adopted an infant/child?
embryo recipients have lesser responsibility
embryo recipients have the same responsibility
embryo recipients have greater responsibility
prefer not to answer
How does the responsibility of embryo recipients to provide access to the identity of their child's genetic relatives compare to that of parents who adopted an infant/child?
embryo recipients have lesser responsibility
embryo recipients have the same responsibility
embryo recipients have greater responsibility
prefer not to answer
How does the responsibility of embryo recipients to build a relationship with their child's genetic relatives compare to that of parents who adopted an infant/child?
embryo recipients have lesser responsibility
embryo recipients have the same responsibility
embryo recipients have greater responsibility
prefer not to answer
How does the responsibility of embryo donors to be involved in a child's life compare to that of birthparents in adoption?
embryo donors have lesser responsibility
embryo donors have the same responsibility
embryo donors have greater responsibility
prefer not to answer
Which of the following statements comparing embryo donation to adoption (of infants/children) would you agree with? (Select all that apply.)
To which of the following do you believe donor-embryo conceived individuals should have access? Select all that apply.
Do you believe that embryo donation is an ethical way to build a family?
no
yes
only when certain conditions are met
prefer not to answer
Can you specify what conditions would need to be met for an embryo donation to be viewed as ethical?
Are you currently raising children in your household, or have you done so in the past?
yes, currently raising children
yes, in the past
no
prefer not to answer
Which of the following best represents discussions about embryo donation had with your children?
I have told them about embryo donation in the abstract
I have told them specifically about how embryo donation relates to our family story
I plan to tell them about embryo donation in the future
I haven't told them about embryo donation and do not plan to do so
other
prefer not to answer
Which best describes how you found out about your family's relationship to donor conception (i.e. that your parents were embryo donors or recipients)?
always knew (or can't remember finding out)
my parents told me as a child
my parents told me as a teen
my parents told me as an adult
I found out from a direct-to-consumer genetic test
other
prefer not to answer
Can you specify what the other way was that you found out about your family's relationship to embryo donation?
If you were conceived by embryo donation, how do you feel about the circumstances of your conception?
positively
neutrally
negatively
prefer not to answer
If your parents were embryo donors, how do you feel about their donation?
positively
neutrally
negatively
prefer not to answer
Did you have genetic siblings being raised outside your home as a result of your parents' embryo donation?
yes
no: their donation to another family did not result in a successful pregnancy
no: their donation was to research
unsure: I don't know what the outcome of their donation was
prefer not to answer
Which best describes your knowledge of the people whose embryo donation resulted in your conception (e.g. your genetic parents)?
I knew them growing up
their identity was released to me at age 18
I have been able to communicate through an intermediary without knowing their identity
the donors remain fully anonymous (I have no communication or knowledge of their identity)
I found the identity of my donors through direct-to-consumer genetic testing
I found the identity of my donors through a donor sibling registry or social media group
prefer not to answer
Have you had contact with any genetic siblings raised in different households as a result of embryo donation?
yes
no
prefer not to answer
If you have contact with genetic siblings raised in different households as a result of embryo donation, which of the following best describes the relationship?
emotionally close, like other family
cordial acquaintances with positive interactions
emotionally strained or sometimes challenging acquaintanceship
a dysfunctional relationship which may be close at times but is turbulent and generally difficult
do not have a relationship at all
prefer not to answer
Which of the following labels do you identify with? (optional, need not select any but, may select all that apply.)
If you identified as religious, which of the following describe your religious orientation (select all that apply)?
