all right well hello from the
International Association of privacy
professionals
I am Caitlin Fennessy research director
here at the ia pp and I'm here today
with Danny Shapiro author of the
national bestseller inheritance and we
were lucky enough to have you Danny
keynote our IPP summit in Washington DC
last spring so we were just delighted to
have you back here in Portsmouth New
Hampshire as part of your your national
book tour as I understand it and Danny
is speaking this evening at the Music
Hall in Portsmouth New Hampshire so for
any local privacy pros out there I hope
you'll you'll show up and come see her
but Danny as I said I am just incredibly
honored to be the one sitting here with
you I mean all of your writing and of
course loved your book and I have to
share as I just shared with you in
person that I grabbed my copy of
inheritance this morning having just got
back from a week away where my mom was
helping out with my kids and I I found
this note tucked inside that I just
thought was so telling so had to share
it it just says loved it thank you mom
so just an awesome book
so before we kick off our discussion I
just wanted to ask for your help setting
the stage with regard to the book as you
know as we've you've talked to our
audience the IEP p membership is largely
made up of privacy professionals who are
tuning into our conversation working in
all areas of privacy for those who have
not yet had the pleasure of reading your
book can you help us set the stage give
us the elevator pitch what this is all
about what brings you here yeah
absolutely and and and before I do that
let me just say that inheritance in
hardcover was published a year ago
it comes out tomorrow in paperback which
is why I'm back on the road on tour but
in this year I've been on tour pretty
much full stop all the time
more than a hundred events and I've
noticed over the course of this year
that increasingly some of the questions
during the Q&A sessions more and more
have to do with privacy questions about
privacy so elevator pitch in the winter
of 2016
my husband was sending away for a DNA
kit as I think of it recreationally just
for fun to see maybe if there were some
distant relatives that he didn't know
about so that he'd be able to speak to
his elderly dad about that kind of thing
and he asked me if I wanted to do it too
and I had absolutely no interest I
wasn't curious I knew where I came from
I knew everything about my family that
there was to know but something made me
sort of just shrug and say sure as I'm
sure you all know these companies lower
their prices right before the holidays
make it very appealing make it be like
no big deal it's just fun and so a
couple of months later when my results
were returned in short order they
revealed to me that my dad who had
passed away when I was young and who I
had been very close to had not been my
biological father and that led me
without giving everything away but down
this rabbit hole into a big part of the
world that I think that interests
privacy professionals resides which is
that I came to discover that my parents
had had fertility issues that they had
gone to an institute that used donor
sperm anonymous donors and that my
biological father was an anonymous sperm
donor who I found within 36 hours of
discovering that my dad had not been my
biological father and that has plunged
me since then into this world of
questions and bioethics and all of the
issues I'm sure some of which we're
going to talk about
in terms of what is our responsibility
to each other in this world where
science has changed all everything all
the rules I was going to say but the
rules are changing because of these
unintended consequences of this
combination I think of the the one-two
punch of easy accessible inexpensive DNA
testing that has become the number one
holiday gift in America and the internet
which makes everything figure out a bowl
and discoverable thank you so much I
think for for privacy professionals your
your writing in this topic is so
intriguing in part because it's so
personal right you make these issues
that sometimes are the subject of
lengthy privacy notices so real and so
personal so yes let's let's talk about
some of those issues so in in your book
you write about privacy in and sometimes
you even you know touch specifically on
that more often I think you spoke of
secrets and surprise and so every time
you said the word surprise it made me
think about expectations and I think in
the the privacy world we think about
meeting her setting user expectations
and how to avoid shocking surprises so
you know when you did this you speak of
it as a bit of a whim but presumably
there were some kind of Terms of Service
I would love to hear your thoughts on
how prepared you felt for the
information that you were given about
your own genetics and if you had any
concerns about how your data you know
might be used without you knowing well
to start with I am certain I mean I know
for a fact that there are these terms of
use you know very tiny or at least that
as I recall you know you check the box
you can barely even see what you're what
you're signing away or what
you're you know either what rights are
you signing away or what you might be
letting yourself in for the marketing of
of these particular companies DNA
testing companies is really all about
you know ancestry.com it's Kelly Ripa
waving the Italian flag saying I just
found out I'm one-eighth Italian it's
all all good fun it's all you know fun
facts and very little is made of the
approximately two percent of people who
take these tests but in the way that I
did unsuspectingly and discover what in
that world is known as as an NP II which
stands for not parent expected so there
was no part of me that was prepared for
that
partly because I had no suspicion that
that was the case I think today people
are becoming a little bit more aware
partly because of my book and partly
because of a lot of news stories that
this is kind of epidemic with how many
people are discovering things about
their things that were not that they
that they hadn't signed on for that they
had no idea it's not always not parent
expected sometimes it's not child
expected sometimes it's not half
siblings expected it's lots of different
kinds of discoveries but they're all
they're all happening and in my
experience as the person who I think has
probably met more of these people than I
would say anyone because they all come
to my events and in my book tours there
is there is a sense of people aren't
taking these tests because they think
they're going to find out that kind of
thing they're taking these tests because
in the same way that I did for the most
part and making these discoveries in
terms of privacy I honestly didn't think
about it I think I would today four
years later because again it's much more
understood that how how many how many
doors and windows and pathways our DNA
leak can lead to and you know the
question of what happens to it
and and who can see it and what what's
that gonna mean and has that horse fled
the barn or is there still anything to
do about it I you're speaking that makes
me wonder if some of these issues are
too big to to prepare yourself for or if
I guess the question is do you think
there would have been a way or there is
a way to kind of prepare the users for
these types of surprises or privacy
issues I don't think anybody thinks that
it's going to be them yeah after I speak
now people either say I'm never taking
one of those tests or they immediately
order one of those tests or they reset
their privacy function in the tests that
they've already done
people have different responses based on
their own conscience I mean I've had I
have someone a friend of mine who said I
think that probably my father wasn't my
biological father and I'm never gonna
take one of those tests because it's a
family business you know the family has
a business and he would be terrified of
what would happen if it got out that
that was the case but for the most part
most of the people making these
discoveries aren't they're just I mean
in retrospect when I think of my story
it was in the light of retrospect very
clear that in all likelihood my father
wasn't my biological father but there's
a term that I that I came across in my
research as I was writing the book and
it's a psychoanalytic term and it's the
unthought known hmm what we know in our
bones in our sin you and our marrow in
our gut but we it's too dangerous to
think so we don't think it and I find
that such a powerful painful poetic
human you know I think we all have
elements of it and it's a question of
how much or how big and in my case the
unthought known I mean even as a writer
when I go back and I read my early work
you know when I was a 25 year old baby
writer
it's there in my work I knew but I
couldn't think it so when I went ahead
and said sure what's you know I'll spit
into the plastic vial it was with no
nothing in my body was saying oh and I
think that that's really true fur for
most people and which is why I don't
have the latest statistics about this at
my fingertips but I heard maybe six
months ago that ancestry know that that
23andme was fielding between four and
six thousand phone calls a week from
people saying like I don't understand my
results and they're training more people
to answer the phone lines and have a
little bit but but they're also really
trying to keep it really out of out of
the public sphere as much as they
possibly can the the CEO 23andme was
asked on a podcast I was on Freakonomics
if she had read my book and or heard of
my books and she said no and I know that
there's no way that's true Wow yeah
she's like what what are you speaking
this book you know and and actually as
far as I'm concerned it's kind of missed
a mistake on their part because I have a
good story it was a painful and shocking
story but it was a good story I loved my
dad I still you know he was he's my dad
you know and and I met my biological
father and he's a really good guy who's
not my dad but who I come from
everybody's been kind everybody's been
good everyone has embraced everybody
else it doesn't get better than this
I'm so like if you're gonna if you were
ever gonna say this is the kind of thing
that can happen as an unintended
consequence I'm a good story I hear so
many bad stories painful stories so I
want to turn to to your dad you know
it's helpful to understand how you think
about you know your privacy and your own
genetics but kind of turning to him and
I you speak to this in the book you
speak about your search for him
and your outreach to him oh you need my
biological I'm sorry that's okay your
biological father
so can you can you share with us
how you think about your biological
father's privacy you know either where
you began with that or where you ended
up with this let's start with where I
began okay when I first discovered my
biological father which took very few
keystrokes and a hunch and educated
guess I first saw him on a YouTube video
giving a lecture and it was unmistakable
that he was my biological father he I
mean he gestured the way I'm gesturing
right now within hours I had written to
him but and I don't know how I knew to
do this but I was able to put myself in
his shoes I have heard stories since
then of people who make this discovery
and in their shock or their sense of
betrayal or their rages I'll send a
registered letter or hmm a half a dozen
newly discovered half siblings will
write a letter together or and and you
know not thinking about what it's gonna
be to be this elderly person on the
other end of that who's opening his
email and thinking that he's gonna you
know have his golf club
you know dues to pay and you know some
political contributions to make and
instead there's an email saying I think
maybe you're my biological father I was
very aware of how shocking that might be
and so I wrote a very careful letter and
I may even I don't know that I use
privacy as a word in that first letter
but it came up very quickly between us
when we started exchanging emails I was
aware that this could potentially be uh
pending somebody's life as it turns out
and when he wrote back to me the first
time which I also was very conscious
that he didn't have to do
he could have ghosted me he
could have gasps let me he could have
said I have no idea what you're talking
about I was never a sperm donor you're
out of your mind
please don't contact me again he could
have done what one young woman came up
to me at an event and said she found her
biological father and she got two words
back from him not interested right so I
was aware that he was kind in his in
replying to me at all and in making it
clear that I wasn't barking up the wrong
tree
he spoke of living a quiet life with his
family his children and grandchildren
living nearby living in a retirement
community I mean if you parsed what he
was saying it really was leave us alone
or don't don't just don't intrude
don't upend my really lovely life that
I've built for myself over all of these
years as we see also looked me up and
the good news because I've seen many
people in the situation donors or other
members of a family who are contacted by
someone who has discovered that they are
related and universally the response of
the family is if you'll threatened
I think it's hardwired I think it's it's
a primitive primal kind of what do you
want and it's usually you you're looking
for money it kind of just goes straight
to the financial because I think that's
where people feel most easily like feel
it most easily while normal vulnerable
and and i think i intuited all that but
so when he went on my website i think he
saw that i was had a successful career
and a contented life and you could glean
a lot from my website but it also showed
that I was a writer mm-hmm it showed a
picture at that time on the homepage of
my website of Oprah with her arm around
me you know which is like good news and
bad news in the situation and I think he
was terrified that he was going to be
somehow revealed and so as
we progressed another reason why I say
that our story is such a good story is
that I think everyone tried to do the
right thing by each other I really
wanted to respect his privacy I also
really wanted to write a book and I had
to find a way to not to not make but
those two things you know mutually
exclusive or impossible or in conflict
with each other and so I took great
pains while I was researching reporting
writing inheritance to protect his
privacy it wasn't just changing his
names there are a lot of details in the
book minor details that changed his
identity enough that I didn't want
anyone who knew him to be able to read
the book and say that sounds an awful
lot like Ben Walden I didn't you know
like I didn't want that to me at that
level like gosh I wonder if that could
be Ben Walden I then when I finished the
book sent it to him for his input I
wanted him to feel that his privacy was
protected and as a memoirist it is like
memoirist 101 that you do not send a
manuscript
to people that you've written about it's
like sending them like a hunk of wet
clay and going here like would you like
to reshape this but I got his blessing
and he did feel like his privacy was
protected but in terms of how am I
thinking about this has evolved we're
living in this time that no one could
have imagined the promises I don't have
a lot of patience for the promises of
anonymity that were given to people at a
time when the idea that there could be
these kinds of discoveries would have
been the stuff of science fiction it was
never gonna happen right and when I
encounter people who get I mean I was at
dinner just the other night with a woman
who just folded her arms and she said I
know two families who have been ruined
by being contacted by by doing her
offspring and I just I just know I just
don't believe in that she also said to
me and your father still your father
like thank you it have you walked for a
second in my shoes just wondering
and I do believe I do feel that the
father who raised me is still my father
but I had to get there right it wasn't
it wasn't like that
regarding the contact I what I said to
her was the children who or the grown
children who discover this they didn't
ask to be conceived this way they didn't
ask to live a life where their
identities were hidden from them where
they were giving incorrect medical
information for their whole lives where
there was something about them that
didn't add up and it didn't make sense
and that just felt like something isn't
quite right and then they didn't ask to
make a sort of seismic world rocking
discovery when it comes to identity at
some point well into their lives they
didn't ask for any of that and so
they're walking around kind of reeling
donors I mean I see this at my events
all the time now I from the first night
I saw it not when I speak it's something
like the I AP people and I'm just I'm
doing in November people are coming from
all over the place I would see elderly
men and I would think firm donors and
then I would see all of these other
people who looked literally like they
were radiating like hunger and intensity
and pain and I was like you just found
out and then there would be couples
sitting there looking kind of stricken
and I found out very often that they
were parents who had never disclosed to
their children who were trying to figure
out and this is heartbreaking to me but
this is happening all the time now
they're realizing that their children
are going to find out and they always
plan to go to the grave with a secret
are they going to do that or are they
going to do what I would think of as the
last great act of parenting that they
can do and have an incredibly painful
difficult reckoning with their kids but
tell them the truth so I'm getting a
little off the subject privacy here but
it feels to me like the rules that would
seem simple don't necessarily apply
there's a lot of gray area and there's a
lot of
I mean I have a relationship with my
biological father I respected his
privacy he's been very kind to me we
like each other what if I had been one
of forty-seven I guarantee you we
wouldn't have this relationship what
does it mean - and that happens all the
time
yeah it's happening constantly I
actually didn't you say these aren't
privacy issues necessarily but actually
where I wanted to go with this
conversation is touching on many of the
things that that you've now raised and
the different groups that you have
outlined you know as as being there and
how you think about the impact and and
the privacy implications for each of
them so you know you touched on on sperm
donors and you touched on adoptions you
know I think obviously the prevailing
wisdom 50 years ago was that anonymity
was possible and it was possible with
sperm donation it was possible with
adoption it was possible with affairs
and so I you know you wrote in your book
at some point I think someone told you
or said to you you know there are no
more secrets and I'd love to get your
thoughts you know if you have any kind
of further thoughts on that issue and
and how that changes the nature of
privacy in society you know have we lost
something
if choices made sometimes at a very
young age cannot be forgotten you know
and the reinvention that maybe was
possible when they could be is not
possible today and strains a little from
privacy but for the Idol it's so complex
right because in the case of sperm
donation or egg donation I had an
interesting conversation at Harvard not
that long ago where one of the
bioethicists was saying that that they
don't feel that the that the donor has
any responsibility at all to offspring
any I mean every responsibility to be in
contact responsibility to say I see you
you exist responsibility to supply
medical information and I said you know
that's so interesting so here's another
scenario um
a couple a man and a woman have a
one-night stand they don't know each
other they're strangers yeah they have
sex she goes off she's pregnant she has
the child it's 25 years later and that
child contacts that man finds him
through DNA does that man have any
responsibility to that child and this
bioethics student said yes I think he
does I said well that's really
interesting because he was not trying to
procreate that night in the back of that
car or whatever donors are right they're
not trying to have their own offspring
but they are aware that if all things go
well that is in fact what they are doing
what they're being paid to do so it's
interesting to sort of separate out
completely the idea of I mean I think
our thinking has evolved and has
continued to evolve I mean it wasn't
just that anonymity was possible back
then it was that it was desirable it was
that it was considered for the good of
the child the idea that what we don't
know doesn't hurt us was prevalent so so
there all of these different kinds of
questions and issues there's something
further I wanted to say about that what
was it
it had to do with like the the now you
you all probably know this but both
France and I think Spain have I know
France just voted like this week that
there be no more anonymity in in in in
donation that anonymous donation is now
not legal we're now at a time where it
would seem to me and one of the reasons
why I continue to want to talk about all
this is where you have I mean there's
there's the question of there's the
question of privacy but we proceed the
question of privacy with the question of
secrecy and non-disclosed
so let's take a situation in which
everybody does to what my mind is the
right thing which most families today
are doing not all there are still people
coming up to me regularly saying my my
teenage son doesn't know or I just had a
baby using a donor egg and but you know
I gave birth so what difference does it
make like lots of stuff like that it's
like all I say is they're gonna find out
they're gonna find out right gonna find
out that's all I can say I don't want it
like ascribe any moral anything to it
they're just they're gonna find out but
for the most part people are disclosing
and then I also have an awareness that
in some cases the donor becomes part of
the family system everybody knows there
is a sense in the larger extended family
that this is the way that this child was
conceived and so in those situations
that I'm talking about family systems
not like DNA to solve crimes and things
like that but in family systems then
that sort of starts to mitigate the
questions of privacy because everybody's
kind of on the same page about this the
I would say the intersection of privacy
and secrecy here is when some people
want to keep something a secret and then
they don't get to and because it's
because it's not private and I mean I
think we can pretty much safely say or I
can I think secrets are toxic I think
you know Carl Jung once said until you
make the unconscious conscious it will
direct your life and you will call it
fate I think we would like to be
conscious of the things that are
directing our life and not have it be
based on secrecy but privacy is
important and how do we live in this
time where there are secrets pouring out
and yet at the same time they they they
impact the privacy of individuals and
and so I think in part perhaps you've
answered this question but it would be
interesting to me to
understand if if transparency and
openness is your answer or not you know
your genes are perhaps the most intimate
thing about you but they can be inferred
as was the case with your biological
father even if you don't take these
tests you know as we begin to think
about giving people agency over their
own genetic data and their own their own
genes is openness and transparency
there's or is there something else we
can do to to provide that agency I would
love to think that there's something
else that we can do what would that be I
mean I but that's I do think that
openness and transparency is the first
step but it's probably not the last step
it's probably not the only step does
that make sense yeah yeah no and it's I
mean I feel like it's a issue that you
you raised
other issues beyond this realm whether
it's you know solving crimes or the like
your your data is out there pretty
publicly now and so I don't understand
that yeah and that's interesting too I
mean the number of educated educated
people who come up to me and say well
I'm never taking that test because I
don't want my information out there and
they don't understand that their
information is already out there their
third cousin took it that's right I find
but really I would say that in my
experience in my travels for the last
few years I'm for the last year that
feels like a few years that it's that
many many people are operating under
kind of miss miss miss apprehensions
misunderstanding about what that is so I
I guess kind of thinking back to the you
know maybe we can't we can't solve this
agency problem here but having lived
through this experience yourself now are
there any
tools or resources that you think would
have made your path easier that you
would like to see out there to help
other people in these situations yeah
and some of them I think are starting to
be developed but I would begin in I mean
in in in the world of DNA testing with
much greater transparency and support on
the part of the companies who are doing
that this this testing and an awareness
of the of these unintended consequences
and how many hundreds of thousands of
people are being affected by this and to
not be trying to sweep it under the road
to actually be I've yet to see any of
these companies do anything other than
try to kind of minimize that and
maximize all the other you know
marvelous and fun things that they're
doing that were you know important
medical data but also like you know
that's not how they market it it's all
fun facts yeah there are more people
going into sort of dual fields of
bioethics and and psychology because
there's just such a it's never the
effects of the secrecy both of late
discovery adoptees and and donor can see
if people have never been studied and
the reason they've never been studied is
because it was a secret so now there's
just starting to be a little bit of data
and and and and surveys and making a
discovery like this is initially a very
self alienating feeling like this person
who I thought I was I'm not made up of
who I thought I was it's very different
and I really like to make this
distinction it's very different from
growing up adopted and always knowing
yeah
because our identities are formed by the
stories that were told from the time
were very small and if and our
narratives are created out of what we're
told and our our identities are built
that way and if if someone is adopted
and they know they're adopted then they
know why they don't resemble their
biological their their their their
social parents they they they can
account for their feeling of other Ness
they can supply reasons for this
beautiful term that I write about an
inheritance genealogical bewilderment
there's like there's they know why
they're feeling what they're feeling but
the world of people whose identities are
withheld from them which includes some
adoptees fewer and fewer many donor
conceive people were they were they were
deceived you know there was a huge
omission and it's more than omission I
mean they were the stories that that
that we were told from the time we were
very small were simply not true so
you're building your identity around
something that's not solid and there are
literally hundreds of thousands of
people who who need some sort of help I
mean they're turning to my book I mean
that's the only help there is out there
it's people are reading inheritance and
parents are telling their children or or
you know the the donor can see people
are feeling less alienated from
themselves but I think anything that can
I mean in bioethics programs this is a
huge field of study I think it's gonna
keep bioethicists psychologists
sociologists and honestly attorney is
too busy you know for the next couple of
decades until it's over and it will be
over this particular thing will be over
because the world of people who who had
this kind of secret regarding identity
kept from them that's that's coming to
an end because it has to it has to not
because it's bad or wrong it has to
because it's all coming out so I really
think 2025 years from now the idea that
there were ever these kinds of secrets
it's just gonna be like like what do you
mean that's so crazy why would anybody
do that
it's interesting you you say that I
think in part because I think the
broader privacy field is kind of going
down the line of privacy ethics and and
realizing that and if the notice
tick-box consent that you described at
the beginning is is just not doing
enough and we need to think about ethics
and Trust and I think maybe with that I
will thank you so much for for joining
us here this was incredible really
appreciate your time and wish you luck
at the Music Hall tonight I'm sure it
will be wonderful and so thank you and
thank you to all of you