EDC Conference // Erin Jackson, “Stranger Than Fiction”

David Velleman: Our next speaker is Erin Jackson.
Erin is the– [Audience cheers]
–Erin is the founder of a website and
online community called “We Are Donor Conceived”. She is, I presume, responsible
for many of the connections that have already been previously forged among the
donor conceived attendees. She is a freelance writer based in California,
and her title is here. [Audience applauds and cheers] Erin Jackson: Hi, thanks so much, David. I’m so happy and excited to be
here, and happy that this gathering is happening, because I really think this is
an important and crucial topic that we should all be discussing more. So three
facts about me: I’m a Canadian living in San Diego; my favorite dessert is all of
them; and when I was 35 years old I learned my dad is not my biological
father. Yeah, that really happened. This simple fact didn’t just blow my mind, it
vaporized it, sending tiny brain fragments deep into outer space. At the
very same time, it also made complete sense. Before I could form a conscious
thought, I heard myself say, I knew it! I heard the truth from my mom, which was
lucky. I think she thought it was the right time for me to know the full story
about my origins, and, you know, she picked a good time, really. I was 35 so it was
quite late in retrospect. But at that point I’d been happily married and
living the dream as a food writer in San Diego for five years. I had a strong
support group around me, and life was really good. I ordered a 23andme test
within about 90 seconds of hanging up the phone.
It’s the fastest $200 I’ve ever spent. In that moment I realized half of my health
history was suddenly a mystery, as was my ancestry. And I needed to know what the
tests would reveal, ideally as soon as possible. Oops.
Oh no, I went forward. Sorry. The next day it felt like I woke up in an
alternate universe. Nothing about me had changed, but suddenly half of my identity
was up for debate. As a writer, I appreciated the crazy plot twist my
life had just taken. It was confusing and exciting. But more than anything I was
grateful to finally know the truth about who I am, even though a lot of questions
still remained. While I was waiting for the DNA test results I remember staring
into the mirror a lot. My face had always been a source of confusion. As you can
see, I don’t look much like my older sister at all. But now I had an
explanation for my face. With some practice I could look at my reflection,
subtract my mother’s features, and see this stranger staring back at me. It was
mesmerizing and deeply weird. My DNA test results came back much sooner than
expected. There wasn’t much in terms of disease markers, that section was pretty
boring, actually. But I found out I’m about 25% Ashkenazi Jewish. So that was
the first surprise. The second surprise just about knocked me out. I clicked on
the DNA relatives tab, and right there, right on the top row, was this: half
brother. Okay, so the text wasn’t actually that big but it sure felt like it.
Half brother? I was expecting to find a handful of super distant cousins who
I’ve never talked to. I had no idea something like this was even possible.
Seeing a sibling match was more shocking than learning my dad is not my
biological father. His full name was listed, and, naturally, I googled him
immediately. When I saw photos of his wedding, my brain exploded all over again.
And this time, so did my heart. This is us together in Toronto. As you can
see, we’re definitely half siblings. While Rich and I were getting to know
each other, my husband James, an IT engineer who loves a good puzzle, was
digging through my DNA test results. Through a fairly close DNA match–I think
a second cousin once removed, whatever that means–and some genetic genealogy, he
generated a family tree, found the common ancestor, and traced the path back down
the generations to me, revealing the identity of my biological father, that
once anonymous sperm donor, in the process. An obituary from 2006 provided
the final clue. With his full name confirmed, I turned to Google. I learned
he’d moved to Toronto to pursue a PhD in philosophy, of all subjects. And hoped
to teach the subject at a local university. On a personal level, this
resonated deeply. There were photos too. Thanks to classmates.com, I learned he
was on the swim team, and he edited his high school yearbook. Two things I also
did in high school. I saw his high school grad photo, and his university undergrad
photo with 70s fashion and massive sideburns in full effect. Thank You
classmates.com. It was surreal to see his face. He didn’t look exactly like I
pictured, but the resemblance was undeniable. At first, finding out his name,
seeing a photo, and learning some small details about his life felt like a
miracle. I wept in gratitude. But later I didn’t feel so fortunate.
Knowing this basic information no longer felt like a gift. It felt like justice. After the initial shock wore off I
wanted to know everything I could learn about donor conception, so I hit the
library, and I hit the library hard. I absorbed scores of newspaper articles
and academic studies. I read books, listened to podcasts, and watched
documentaries. There was a surprising amount of content available on a subject
I had never really considered. Very quickly, I was faced with my own
ignorance on the subject, which was nearly complete. When I saw posters about
sperm donation in my university, I thought the idea of helping gay or
infertile couples was pretty great. At the time, it seemed like a win-win. I had
no idea how donor conceived people feel about their existence. I was only
thinking about the parents and how they would benefit from having a child. Put
another way, I did not know what I did not know. My husband tipped me off to a
few Facebook groups devoted to donor conception. I joined a large one with
parents of donor conceived individuals, donors and donor conceived people, and a
smaller group populated by donor conceived people from all over the world.
I immediately learned I was not alone. There were lots of people who felt the
same way I did. There were people who were struggling with the emotional
impact of receiving such life-changing information, and a few who had worked to
change the laws in their country to protect the rights of donor conceived
individuals. These people became my heroes. I wanted to do my part to help
and support the community, so in 2016 I launched a website called “We Are Donor
Conceived”. It started mostly as a page of resources, just all the stuff I’d come
across in my own quest for information. I also decided to start a
Facebook group to disseminate the website content, since that’s where the
majority of conversations were taking place. On the first day, the website
got over a thousand hits. People from all over the world were looking at it. I was
amazed. A few years later, with the help of some Facebook group members from
Canada, the US, and Australia, we created a welcome message, which I will play for
you now. “I found out I was donor conceived when I was 35 years old.
It was intensely shocking. It kind of felt like a thousand fireworks going off
in my head at the same time, but it also made a lot of sense, and was deeply validating.” “I found out I was donor conceived when I was seven
years old. I learned the truth from my parents who sat me down and gave me a book that
explained what donor conception was, and at the time that didn’t really mean
anything to me. But that has changed as I’ve grown older, and I’ve really become
interested in where I’ve come from.” “I found out that I was donor conceived
when I was 22. I took an ancestry DNA test, and a sister popped up, and I’m an
only child.” “I found out that I was donor conceived when I was 38
years old. My parents finally decided to tell me the truth after my sister insisted that they
tell me, because she was afraid that I would find out from other family members,
because apparently it was a big family secret that everybody knew except me.” “When I found out the truth about my origins, I was disgusted. I couldn’t look
in the mirror, I didn’t want to see myself, I didn’t want to see my body, I
didn’t want to hear my name. There was a huge question mark, and I
didn’t know where I had come from.” “When I found out the truth about my origins, I
felt relieved, but at the time, because I was so young, I really couldn’t grasp
what donor conception or being donor conceived mean to me. And it means
something completely different now that I have found my donor, and it has meant
to me, in finding my donor, that I have, in a sense, found my identity, and understood
fully who I am and where I come from.” “When I found out the truth, I just remember screaming the word “what” over and over
and over again and just being completely hysterical, and just realizing that half
my family tree and identity was completely gone and replaced with a big
question mark. It was just a really surreal experience, and to realize that I
was only half-related to my sister was a pretty painful realization as well. And
then just not knowing who that person was that is half of me, and never being– having the possibility of never knowing
who that was just felt completely unreal and unfair. But at the same time it was
super validating, because my whole life I felt like I didn’t look like anybody in my
family, and I asked if I was adopted, and I just had this feeling that something
wasn’t right, but I couldn’t put my finger on it. And so this was the answer
to that feeling.” “I found that being donor conceived, it
can be isolating when you don’t know other donor conceived people, because you
feel like no one truly understands. But I think that finding other people that
have been through similar circumstances, it can really help the
process become a lot easier.” “If you’ve just found out that you’re donor conceived, you should know
that you’re not alone, you’re not a freak, and it’s okay to feel complex emotions.” “No matter what you’re feeling, I want you to know that it’s totally normal to feel
a little crazy right now. And also that it does get easier with time. So hang in there.” “You can feel what you’re feeling and whatever you are feeling, it’s okay.” “Being donor conceived can be an isolating experience, but with the advent
of DNA testing, hundreds of people are finding out the truth,
and that’s a good thing.” “Family secrets are toxic
and the truth sets us free.” “We Are Donor Conceived is a resource center and international
community for donor conceived people. We get it. We know that learning one of your
biological parents is an anonymous donor is something that can change your life
and your identity forever.” “We get it because we’ve lived it.
And we want you to know that you’re not alone. Not even close.” [Audience applauds] Thank you. So since I posted this video
on YouTube and the We Are Donor Conceived website, membership numbers
have grown significantly. We were at around 200 members for the first year or
so, but now there are well over a thousand members, and new people are
joining every day. One reason is DNA testing. DNA testing
is changing everything. It’s uniting donor conceived
half-siblings, providing clues and closure for those seeking their genetic
identity, and creating powerful new family bonds. So let’s just talk about
DNA for a second. In 1979 when I was conceived, the importance of DNA was not
understood. Most people probably first heard about it in the context of a
criminal investigation or prosecution. But now we know a lot more.
DNA is the genetic code that determines all the characteristics of a living
thing. At the very basic level, it’s what makes you you and not somebody else.
Sperm and eggs contain DNA, so when donors give their reproductive
cells to a third party, they’re not simply helping another person have
children; they are allowing that person to raise their biological or
genetic offspring. The people who are born from these donations will share the
same amount of DNA as the children the sperm or egg donors might someday have
with a romantic partner. And let me tell you, a lot of us look a lot like our
genetic fathers or mothers in the case of egg donation. Case in point,
here’s Amy, Colleen, and Leah with their bio fathers. Here’s Amber and her bio dad.
Amber says, “he calls me the clone”. This is Becky and her bio dad. Becky says,
“please everyone tell me how much like him I am, because that is the greatest
compliment I could get”. And this is James with his bio pops, this is the day they
met. Later he updated the group with the following message: “I had a thing last
week with bio pops. The barman said it was lovely to see a grown man having a
good time with his dad. I felt a proudness that I can’t really describe,
but I was so moved by the fact that someone from the outside world could
tell we were related.” And here are a bunch more. So this is probably a good
time to transition into talking about some important facts about donor
conception, and what it’s like to be a product of these technologies. I’ve heard
people mention that we need more evidence, so that’s what I’m trying to
present here. I’ll be referencing the most recent survey conducted by We Are
Donor Conceived. I started doing this on an annual basis in 2016 after I noticed
that most of the available research focuses on young children. For some
demographic info about survey participants, this year we had 312
responses from people aged 15 to 74. That’s about–that’s almost twice as many
as the previous year, which really shows that the group is growing and there’s a
lot of interest and people talking about this subject. The survey attracted
responses from people born in 15 different countries, including Australia,
South Africa, Belgium, Norway, and the UK. The majority were from the United States
and Canada. Most respondents were raised by heterosexual parents, most were female,
and, though the survey was open to individuals conceived via donor eggs,
sperm, or both, 98% of respondents indicated they were conceived via donor
sperm. So six things you need to know about donor conception. Number one: donor
conceived people want to know their origins. When people find out they are
donor conceived, they are likely to seek the identity of their missing genetic
link. 67% of respondents said they took a DNA test to find family members,
meaning the donor or donor sibling. Of those who learned the identity of their
donor, 54% attempted communication with him or her. The most commonly cited
reason among those who didn’t was that their donor was deceased. And I asked
people if it was important for them to know their donor and why. And I’m gonna
share a few responses: “Before I found my donor and my half siblings, I probably
would have said no. But now I can’t imagine my life without them. I reached
out in the first place just out of curiosity.” “It is extremely important. I
had an absolute need to know the source of half of my DNA. I could hardly think
about anything else until I found the identity of my biological father.” “Yes. I need to know genetic history, ancestry history, for just peace of mind. But
because I’m double donor conceived, it’s a huge part of my identity. Who am I?
Where do I come from? Am I like him? Do I have her smile?” And “Yes, he is half of me. Genetics matter.”
Straight to the point. Number two: there is no limit on how many
offspring a single donor can produce. A couple of people have mentioned this, but
I just want to put an underline under this. And–so according to a recent
article in Los Angeles magazine, at California Cryobank, which is the biggest
sperm bank in the country, most donors produce a sample two to three times a
week. Using this estimate that’s about 130 in a single year. The Cryobank
suggests parents purchase four vials for each planned child, so that could reasonably
result in 32.5 offspring each year a donor is actively providing sperm to a
clinic. If that sounds like a low number to you–and it doesn’t
to me, because 32.5 have siblings is kind of a lot–understand that many donors are
active for several years and may donate to more than one clinic. Also it’s regular
practice for samples to be split into multiple vials, which could increase the
number of offspring exponentially. You also have to consider that the banks
ship all over the globe and they’re only–they’re following industry
guidelines, there are no actual regulations. So let’s just do a quick comparison of the
US with other countries. Hopefully you can read that. Most countries on this
chart have a max offspring per donor limit between 1 and 25. In the US the
recommendation from the American Society of reproductive medicine is 25 children
per population of 800,000. So putting that into context in New York City, that
could mean a donor conceived person could have 268 siblings living in the
five boroughs. Yeah. Someone in Los Angeles could have 125, which is still
way too many. This one got a little weird, but I’ll read all the answers. So just
for fun I asked people in the We Are Donor Conceived group how long or
frequently their bio father was a donor, if they had that information. Responses
included the following: “about 150 times”. “Four years, three times a week.” “Ten years,
about 300 to 400 times.” “12 years, twice a week. So far there are 15 of us, but my
doctor thinks there are likely a hundred.” For those of you doing the math on that
kind of donation schedule, that’s one 1248 donations. And “He told us 15 years, and the age gap confirms it.” Number three: donor conceived people do
not support anonymous donation. Luckily no one’s made an argument for that but I
still want to, again, just put an underline under this point, because it
might be the most important takeaway of my presentation. By the way, the fact that we
would literally not exist without donor conception is not lost on any of us. This
belief comes from our own lived experience that everyone, regardless of
how they were conceived, has the right to their biological origins. This includes
where they come from, and who they come from. Here are some relevant stats from
the latest We Are Donor Conceived survey. 78% of respondents do not support
anonymous sperm or egg donation to conceive a child. Only 11 percent are in
favor. The use of non-anonymous or identifiable donor
eggs or sperm to conceive a child has more support amongst respondents: 55%
agree while 28% disagree. And 91% agree that all donor conceived people should have the
option to learn the identity of their donor. And I also asked a question–
another question about this that it didn’t originally include, but I just
want to make a point that we think that’s because that information belongs
to us. Not the government, not a sperm bank. It’s ours. And also other people
have noticed that–mentioned that anonymous sperm donation is banned in
several countries. The UK halted anonymous sperm donation in 2005.
Victoria, Australia followed in 2017. Switzerland, Sweden, Norway, New Zealand
and the Netherlands and Germany also do not allow anonymous
donors. So ending sperm donor anonymity is not a new or controversial idea.
DNA tests are changing everything. I talked about this a little bit before.
Donor conceived people want to know their origins, including who and where
they come from. They want to know their biological mother and father and their
donor siblings. And they can. This is the great part. With nothing but their own
spit and $100, donor conceived people can find their missing genetic links via DNA
testing. It’s amazing. So what does this new reality look like? 72% of survey
respondents have identified a donor sibling. 55% have identified their donor
or biological father through DNA testing. Most people are discovering one to five
siblings–for now at least. That’s 60% of people. But 13% had discovered 20 or more.
And there were a couple people who had sibling numbers in the triple digits.
37% of respondents also found out they were donor conceived from the DNA
test. Many people learn this information as adults, and you could be next. You
could be one of us. Remember, I was 35 years old. Number five: most donor conceived people do
not know the truth about their origins. So before 1990, when donor insemination
was primarily being accessed by heterosexual couples, many doctors
advised their patients to go home and pretend this never happened.
That was actually the medical advice. This was intended to protect the family from
negative judgments of others, secure the donor conceived child’s place in the
family, and obscure the husband’s infertility. The problem is it required
parents to maintain a lie at the center of their family for the entire lifetime
of their children. As a person conceived through third-party reproduction, I find
this incredibly disturbing. And yet, it continues to this day. So what does the
American Society for Reproductive Medicine have to say about this? Well, in
an ethics committee paper published by that group they say, “disclosure to
donor conceived persons of the use of donor gametes or embryos in their
conception is strongly encouraged, while ultimately the choice of recipient
parents.” Donor conceived people disagree with this, by the way. We as a group believe
secrets are toxic. 86% of survey respondents believe it is wrong for
parents to keep this information a secret from their child. So what
percentage of donor conceived people are in the dark about their origins? Well,
this kind of thing is really impossible to measure. But I’ve seen estimates
ranging from seventy to ninety percent. Even in places like Australia in the UK,
where anonymous donors are no longer offered, it’s safe to say the majority of
donor conceived people don’t know the truth about their origins. Number six:
this is the fun slide. Yay, we made it! It is possible to
immediately fall in love with a stranger– and to my donor conceived siblings
watching this, I just want to make sure, I mean platonic love, not romantic.
Let’s clear that up right off the top. Donor conceived people use phrases like
‘instant connection’ or ‘natural bond’ to describe their feelings toward their
donor siblings. 89% believe all donor conceived people
should have the option to know how many donor conceived people they have. and
86% believe all donor conceived people should have the option to learn
their siblings’ identities. These relationships are complicated, real, and
important. As a community–I also want to say, as a community we feel a queasy
excitement around the holiday season. DNA tests are typically on sale between
Black Friday and Christmas, so we’re all bracing for new siblings, with hope but
also with fear that they won’t know the truth about their origins, so it’s like
a happy scared kind of feeling that you would understand if you were one
of us. It can be wonderful when everything goes well, and truly devastating when it
doesn’t. And most of us have experienced both of these outcomes. I’ve been pretty
lucky on the sibling front. I know– I now know of four of them. Seen here this
is Matt, Rich, Mark, and Nina. This is my new reality and it’s definitely strange,
but learning the truth about my origins is the most amazing thing that’s
happened in my life. It doesn’t change the past, but it has altered my future
forever. It has presented monumental challenges, exciting opportunities like
this, periods of intense depression, and unadulterated joy. I’ve also made
hundreds of new friends, many of whom are here today. [Audience cheers and applauds] But when I think about the ethics of
donor conception, things get more complicated. The fact that I’m donor
conceived is a tiny bit of information about me that has enormous lifelong
consequences. Because I am donor conceived, I do not have an accurate
medical history. In fact, half of it is completely blank. There is no state
sanctioned method for me to find out any information about my genetic father. I’m
not entitled to know his name or even see a photo of him. I also have no idea
how many half siblings I have, who they are, or where they live. All of this feels
dehumanizing. So is donor conception ethical? Well, here are some inconvenient
truths to consider. All children are born into the center of their own universe. We
have our own minds and our own identities. We’re not the
products of our parents. We belong to ourselves. More than 26 million
people have taken a consumer DNA test. Ancestry.com is worth more than 3
billion dollars. It’s human nature to want to know your origins. Donor conceived
people are not immune to this–in a very natural instinct, by the way. We are
people too. Donor conceived people are not the product of some unknown mystery
donor. For each of us, there’s one specific person who is genetically
responsible for our existence. For some of us, knowing the identity of this
person is an absolute need. In order for gamete donation to be ethical, the
companies who profit from the sale of reproductive material must recognize and
respect the physical, mental, and emotional needs of the people they help
to create. So I just want to wrap up this presentation with some messages that I
got from people in the We Are Donor Conceived group. I wanted to share
them directly with the group. So let’s do this–oh wait, no. Never mind,
that comes next. Sorry, I’ve never done this before. So there is strong support
among donor conceived people to institute the following reforms. One:
recognize the emotional challenges for donor conceived people. This includes
genetic bewilderment, grief and loss, fear of rejection, and anxiety related to
finding our donor siblings. Two: end sperm and egg donor anonymity. It’s unethical and
irresponsible to offer it, knowing what we know. Three: limit the amount of offspring
produced per donor. By the way, most donor conceived people say 5 or 10 maximum.
Preserve donor information, including updated health information, which could
potentially be life-saving. Five: implement counseling for donors and recipient parents.
All parties should be aware of the reality and consequences of their actions now
and in the future. And facilitate contact between donors, donor offspring, and donor
siblings. I believe these reforms are in the best interest of donor conceived
people, and should be the priority of all companies that profit from our creation.
In the US a handful of companies dominate the industry, which is valued at
about 3.5 billion dollars. And they could change the way they do business tomorrow.
Okay, now those quotes that I was talking about. Right. “The general consensus among
the public seems to be that donor conceived people are selfish or
violating legal and privacy obligations of their biological parents who are
donors by seeking them out. Why are donor conceived people wrong to want this
information, but adoptees or those conceived through one-night stands are
justified? I’m tired of being treated as a second-class citizen because of
decisions that others made on my behalf before I existed.” “Donor conception
involves a commodification of human life. Personally, I do not like the idea that I
was effectively bought and sold by a commercial industry that makes money off
of fertility issues and then promulgates a false narrative that it’s okay to lie
about it. I’m not a product and I’m not a secret. I shouldn’t be ashamed to be alive.” “There is no such thing as ethical anonymous donation. It is an intentional
severance of a biological and ethnic family connection with only monetary gain.” “My ethnicity cannot be changed with money. My parentage cannot be transferred
for convenience. My body and identity cannot, and will not, be sold.” “We want our right to our own biological
identity acknowledged. We deserve access to our own family medical history. We are
a donor conceived and we’re not keeping that a secret any longer.” [Audience applauds] Okay, that’s all.
This is me this is me and my baby bro, Matt. As you can see, DNA does not lie. [Audience cheers and applauds] Man 1: Erin, thank you for your talk. I think
the biggest thing that we donor conceived need to be prepared for in
this particular context is the epistemological problem that has already
been pointed out earlier, at least in the last presentation. And it’s a real one. So
from a scientific standpoint, we have to realize that studies, or in this case,
these are informal surveys, have a certain selection bias, right? So this–in
this case the selection bias involves a lot of people–adults often
of a certain generation who discovered later in life or by accident that they
were donor conceived, and that’s how a lot of us made our way into your group.
The other part of the epistemological problem–epistemology, for the those
without the philosophy background, it’s the study of knowledge. So how do we
know what we know, and how do we know, like, what is actually true? And the other
part of that problem is that, as you point out, most people who are
donor conceived don’t know it. So there’s no way to ask them, and so it’s
actually–it’s an insoluble problem. So it’s actually an enormous scientific–
or in this case epistemological problem. We have to arm ourselves and be prepared
for this as the counter-argument: oh, well, your data are actually self-selecting,
and they’re heavily biased towards– therefore, they don’t count. But we have to–
I think a legitimate counter-argument is that every single
one of our accounts are real, we’re real, we count. So nobody can–
has any right to discount our voices. So there are dozens of us who are gathered in
this room today and we’re here precisely because we realized that
the whole fact of our existence and the way we got into this world created
inherently some significant emotional or psychological issues for us, issues
involving identity. And, you know, we are talking about nothing more, nothing less,
than the most fundamental familial connections that–and severing that
connection, namely parent and child. We’re not talking about, you know, just
some little bits of information. You can’t reduce this–there’s
nothing that that’s simply reductionist about this entire concept, or
positivistic. It’s just, oh, we just one little bit of fact of–oh, did I have
somebody in my family tree who died of some disease or whatever. It goes
to the very core–like, one of severing parent and and child ties,
underprivileging the children and the adults that they become, and throwing into
question the very core of psychology, namely identity. And it might
not be possible to “study” all of this truly objectively. So we need
to be prepared for that. [Audience applauds] Jackson: Yeah, I mean, I’ve been doing this survey
for a couple of years, and inevitably someone will say something like, oh, yeah,
you know, like, these people are biased, they’re in a Facebook group for donor conceived
people. But my rebuttal is, we’re a small group, we have been artificially silenced
by our parents not disclosing who we really are,
and those of us who are being–are speaking publicly, I think we need to be
heard. And also to your point of how, like, essential this is. The way I think about
it is, you know, my desire to know who my biological father is is so ingrained that
I would need a lobotomy to not care. Like, it’s just–it’s, like, in my marrow. It goes
so deep. And–I mean that’s why I’m here. Woman 1: Hi, can you hear me? I recently heard a
podcast, Family Secrets, in which I heard Sylvia Borstein, and I took a quote from–
I took something she said, a saying, as part of who I would like to be now, and
it’s “don’t duck”. So in the spirit of “don’t duck” I’m here as a mother of a
donor conceived child. [Audience applauds] Certainly Gabriel has been the greatest gift in
our lives, but all of you are a gift here too for us, because we know now
that we’re not the only ones, when you’re told to keep that secret, you think
you’re the only ones in the world who have had to endure this. And so you are given this gift,
and you raise a child trying to protect them from every harshness life has to
offer. And then you find out that something you did creates the greatest
pain in their life so far, and that’s a very difficult thing.
So I honor you and I certainly believe that the future of this field is in this
room right now. And I thank you all for that. [Audience applauds] Woman 2: My name is Alicia. I came from
Seattle specifically to meet some new family. My situation is a little bit
different. So I found out in my 50s that my–the father that raised me wasn’t my
father. My mother had had an affair. And I deeply want to thank you for speaking up
because I know how difficult that was for you, and that you both came together,
because my mother would not be able to do what you did. So I appreciate you
coming forth like that. One thing I am doing is I’m a vice president of a
non-paternal event or not-parent-expected group, and we have about 5,600 members
and we’re working with donor conceived and everybody that’s dealing with these
type of issues. And the biggest thing is giving mental health support. And I just
wanted to bring that up because this seems like a thread that I’m seeing with
those of you here. And we need each other. And it just made me feel so good when
you brought up the fact that we’re doing something important in here, and I’m so
thankful for the folks that have been speaking, that have such knowledge
that we need from you guys. Being from Washington State, we have legislation
that’s–I know we’re on the forefront
of getting really good things happen positively for the donor conceived.
So thank you for speaking and for bringing your voice to the table. [Audience applauds] Woman 3: Thank
you so much. So I just have two questions to help me understand better. So first of
all I was really struck that 84% of your membership is female, and I wondered if
that demographic is common across different donor conceived individual
groups, and if you have any insight into why there are more women joining those
groups. And then my second question is, you mentioned the right to know the
identity of the donor, and I just wanted to know, so what would–in your view what
would be the ideal model? Like, what information would you want to receive? So
the name, a picture–like, what would the ideal kind of dossier look like?
Jackson: Okay. Okay, so
the first question, the survey. I think it was the survey that was 84% women. The
group is also mostly women, and I mean, we speculate about that a lot
internally, and I think, for me, I think the explanation is that we talk about,
like, real emotional stuff. I mean, it’s heavy, it’s deep, we get in there. You
know, if you’re in the group you know that it gets real, and I think women are
maybe more likely to be attracted to that kind of group and more comfortable
sharing, although, I mean, there are several male members here today too, so–
also maybe it’s just a Facebook thing. Maybe women are just more likely to join
Facebook groups. I mean, the instant pot group I’m in is also majority female,
so I don’t know what’s up with that. It’s the only other group I’m part of.
Your second question, what would the ideal–I think that probably
varies person to person. I mean– and I do acknowledge there are some
people who don’t want to know anything. Like, they just rather, like, “I’m afraid of
what I find out”. They don’t want to jeopardize their relationship with their
parents, you know, for some people that’s not a road they want to go down. For me, I
was totally different about that. I mean, I want to know the name–and when
you say ‘the donor’, I want to be clear, like, this is my biological father, I
don’t see him at ‘the donor’, you know? I want to know the name, I want to see a photo,
I want to know all about him, I want to know, like, what makes him laugh, you know,
how his life has been, if he has any, you know, lessons he can teach me. I mean, I
would like to meet him in person, it’s not about getting, like, a folder
of information. Yeah. Woman 4: It’s interesting, the woman from Seattle who mentioned that she found out about her father not being her biological father. We’ve had a number
of cases–I mean, the data shows that 1 to 3 percent of people have misattributed
paternity, and we have actually had a number of situations at Columbia where–
oh, I’m sorry, my name is Cheryl Kunis, I’m a nephrologist and bioethicists in
New York at Columbia. And I find it amazing, 1-3%. We’ve had a number of
cases where our bioethics committee, the kidney transplant program, when we found
out that such and such a person who wanted to donate a kidney to her father
was not the person, we found out that the father who wanted to donate a piece
of his liver to the baby was not his father. They all decided they did not
want to tell these people that they were not the father of the child. I was very
upset about it as a–the committee, yeah. The kidney transplant program, the
bioethics committee, they decided they didn’t want to tell these people. I was
very upset about it, because I felt that in this day and age where we really want
to find out reality, that it was the wrong thing to do.
And I felt in many ways it was done in order to protect the recipients, who were
getting the organs or whatever, because the organs were all given. And I’m just
wondering what your thoughts were in terms of the psychological aspects of
that kind of a situation like you have, compared to finding out that, you
know, your father isn’t your father for another reason, because you were donor
conceived. Jackson: I mean, having–I’ve only experienced
the outcome I’ve experienced, but I feel like it’s very similar. I mean,
it’s–there’s lots of layers to it. I mean, there’s the fact that my parents
lied to me about my identity for 35 years. So there’s, like, the betrayal
element involved. And then there’s knowing that a doctor and, you
know, a college student benefited financially from this
happening to me, this information being withheld for me. Like the whole business–
there’s a whole business that thrives based on denying people what I
consider to be a basic human right. So, I think it’s a little bit–probably a
little bit more complicated in this sense. Woman 4: [inaudible] Jackson: I think there are–I mean, I don’t really
know. I don’t know if I can answer that. I think there are different
situations that come into play, because this is, like, we’re talking about
a business that exists for this purpose versus someone who may not know who the
father of her child is. Man 2: Thank you, thanks so much for sharing your story. I have a question. In your experience, and your experience talking to other people, if
you’re able to, to what extent does the keeping of the secret loom really large–
the longer it’s kept, you mentioned secrets are toxic–versus the not having
information. I mean, I appreciate you can’t just introspect and disentangle
the percentage, but I’m wondering if in your experience at all, people who
feel like they’ve always–like always known because it was never a secret, feel
less deprived of something. Jackson: I have a little bit of data on that. You can check
the We Are Donor Conceived website, by the way. I just published the 2019 survey.
And I included a little data point that sort of talks to this point. And I’m sorry, I
don’t have the percentage off the top of my head. But I asked people to respond to
this statement: “the circumstances of my conception caused me to feel angry, hurt,
or confused.” And people on a 1 to 5 scale reacted to that. And there
was a larger percentage of people who disagreed with that statement who were
told either as a child or so young that they don’t remember. So I think telling
early is, like, the best way you can, you know, like, head off some sort of
life-changing crisis, like identity crisis like I experienced and a lot of
other people. Does that answer your question? Okay, good. Man 3: I really appreciate the talk and I’m learning a lot. I
have two questions about terminology. So one–given the focus on the fact
that it’s a business and people are profiting from it, I wonder why, instead
of using the term ‘donor’ that people want you to use, you actually don’t use a
different term. Because this isn’t a donation, it’s actually selling.
Jackson: Yeah. Yeah. [Audience applauds] The term ‘parent’–so I come from law and
there ‘parent’ is a legal determination and not a biological determination. And
law has actually caught up, and is, like, beginning to reflect a lot of insights
from work on child development, where they understand parenting as a practice
and so people–from a child’s perspective, a parent is someone who’s actually doing
the work of parenting. And so law is slowly–but even historically,
the law tied parenthood to marriage and not to biology. So a child born to
a married woman had two legal parents. It wasn’t clear whether the man
was the biological father or not, and the child born to an unmarried woman had no
legal parents. And so I just wonder whether in using the term ‘parent’ there’s also–
like, why you’re making the choice– Jackson: Okay, yeah. Thank you for asking, and I was really hoping to address this so I’m glad this came up. Yeah, I have feelings about the term ‘donor conceived’,
even though it’s, like, in the URL and the name of the group I started, because
they’re not donors, they’re being paid, I like to think of them as sperm vendors. I
mean, that’s more accurate. But that’s the word that people use. So I’m using
the word people use because they understand it, you know? And I’m trying to
evolve the definition of what a donor is. You know, they’re giving something, but
they’re not giving it freely, and they’re giving more than people seem to
acknowledge. Like, people will say things like, oh, it’s just sperm. And it’s like,
yeah, that’s half of my DNA. I don’t think it’s just sperm. And then to the parents
question. I try not to use that word as much as possible because for me that’s–
‘parent’ is, like, a verb. You know, it’s like an action word. But I used it in the case
of a–you know, non-gender-specific, you know, way of saying–because it
gets really complicated when you’re, like, donor slash sperm vendor slash, you know,
like, the language is just very complicated around this. And it is a
frustration of mine. I would love if there was another word. I mean, at
one point I asked the group, like, is there a better word? And there really
isn’t. So kind of stuck with it for now. Woman 5: Thanks so much for your talk.
We’ve heard a lot about this claim that society is over-geneticized.
And some of the things you said maybe go against that, but I’m wondering what your
reaction is to that claim, and how much you think we should be trying to change the social
context around the importance of genetics to identity. Jackson: I think that is a question
that I’m not sure I have an answer to. I don’t even–I mean, what does
‘over-geneticized’ mean? What’s the definition of that? Like, you’re saying
people are placing too much importance on genetic identity? Yeah, it’s
really interesting. Because until I found out my dad is not my biological father, I
would say I put, like, no importance on that. So… But knowing that
someone else was made it important. And it wasn’t so much about genetics, it’s
about identity for me. And that person’s identity is tied into my identity, and
that’s something I struggle with too, as a self-assured kind of independent
person. You know, the fact that, like, some some guy out there, I would need to know
who he was to know who I was, is something I’m still struggling with. I
don’t think it makes logical sense but it’s, like–it’s just an emotional reality
that we all kind of struggle with. Woman 6: I’m just wondering for the surveys
that you’ve been doing. Did you ever do any sort of like cross tabulation or be
able to section out respondents who were conceived in–raised by, like, gay and
lesbian parents versus people raised in, like, straight cis homes. Jackson: I did ask that question
but the vast majority were raised by heterosexual parents. It was
like 86%. So I didn’t think there was enough of a sample to really make any
sort of inference. I do know that the people who are raised by single mothers
or lesbian parents or more likely to know at a younger age that they were
donor conceived, probably out of necessity, because, you know, there
had to be some explanation for how they came to be. But other than that I didn’t
find–I didn’t find, like, there was enough data to really isolate and explore that
group, just due to sample size. Man 4: Erin, thank you for everything you’ve
done to advocate for the community. I just wanted to offer a counterpoint to
the insurmountable problem of selection bias in the survey. If a bunch of coal
miners are working and they see their canary die, do they argue
about selection bias? [Scattered applause] Man 5: Thank you so much. It’s been such an honor and
so healing to be able to be here. My name is Dave, I’m donor conceived. I don’t know, I had some thoughts
and they all kind of left. Some things I wanted to bring up in addition are, like, the future where this technology
goes. And my concern that we talk about the ethics, how do you make it ethical, and
this and that. But when it gets down to it, you’re buying and selling human life, and
you are designing a human being, and this technology will continue to progress
unless we put these limitations and acknowledge that maybe there are
technologies that are not worth it, given the unintended consequences. [Scattered applause] And your
point about looking in the mirror and just bewilderment there. I was
born to a woman who was very abusive, and so my situation is there is a stranger
who sold his–just sold my rights away to a woman who just ended up abusing me, and
this kind of ties in to the objective in the studies of, like, you can give me as
many numbers as you want, but my experience is, I have someone out there
who does not care, who used me to make money, and then another person who used
me for their abuse. And the ramifications of that have led me to feel like I do
not see a way that this is ethical given the other–the experience of being
a human being who is sentient and knowing what is happening to you. [Audience applauds] Velleman: Maybe what we should do is–so I had said
that we’ll have a group discussion. Thank you Erin. [Audience applauds]

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