Confidentiality Issues (fwd)

[Lois Bloom]

I had shared the recent Childes exchange with Allison Bloom, one of the
Childes children, and asked for her opinion.  Here is her response.

--Lois Bloom


---------- Forwarded message ----------
Date: Tue, 2 Mar 1999 20:13:20 EST
From: ABMEsq at aol.com
To: lmb32 at columbia.edu
Cc: ABMEsq at aol.com
Subject: Confidentiality Issues


TO:  Info-Childes Subscribers

FROM:	Allison Joy Bloom

Hi everyone:

	My mother, Lois Bloom, has asked me to add my $0.02 to the
discussion of confidentiality issues relative to making audio and/or video
tape data collections available via the Internet.  I will speak to this
issue on two different levels -- as a subject and as a lawyer.

	As a child, I was a subject of audio and video tape studies in my
mother's research lab.  The data she collected in those studies have
become widely known in the academic world.  I have previously given my
permission for transcripts of those tapes to be made available for more
widespread access than just to those students who were affiliated with my
mother's lab.  However, I have chosen to restrict access to the audio and
video tapes.

	Originally, my restriction was based on what one might call
"adolescent embarrassment."  As a child whose name became famous in
Linguistics circles, I felt that I was constantly being "studied" and
evaluated by my mother's colleagues at various functions I attended
(dinner parties, social gatherings, trips with my family to conventions
where my mother was giving talks).  Adolescents, in general, feel that
they are under a microscope at all times;  in my case, it was exacerbated
by circumstances beyond my control when I was a small child.  When I
realized that my mother was showing video tapes of me in her classroom, I
felt (for lack of a better word) violated.  After all, it was my image
that was being shown on screen, and yet no one had asked MY permission to
do so...  My mother honored my wishes and stopped showing the video tapes
in her classroom and denied access to those who sought to use them for
research.  To the best of my knowledge, the tapes have not been viewed by
anyone in recent years.

	I have come to understand and appreciate the impact that my
language development has had on the field of Psycho-Linguistics.  As an
adult, I realize that learning how people learn language can have far
reaching positive effects on society, from helping stroke and accident
victims regain the use of speech and language to helping children with
learning disabilities learn to read and write.  However, I feel that the
data collected 25 or 30 years ago are not necessarily going to have any
more of a significant impact on language acquisition/reacquisition than
data which have been collected more recently.

	I have been fortunate in that I have been able to maintain contact
with the researcher who collected my data -- I see her just about every
day.  As a result, I have been able to have a say in what data have been
released and in what form.  Other subjects are not as fortunate.  They
have been given no control over their proprietary images.  It is not
enough to say that a parent or legal guardian signed a consent form at the
time the tapes were made.  Depending upon what the consent form said, the
parent or guardian was more than likely giving permission for the tapes to
be used solely by people "in house" for a particular research project and
there was no intent on their part for more widespread dissemination of
actual tapes.  At most, permission may have been granted for "outside"
researchers to come "on site" and view or listen to the tapes.  I suspect
that this would be increasingly true the older the tapes are.

	As Amy Sheldon pointed out in the Info-Childes discussions, the
web was not even invented when a lot of the data out there were collected.
Certainly the parents or legal guardians never envisioned worldwide access
to their child's image and/or voice, let alone identifying information.
Although the original permission was granted by the parents or legal
guardians, the fact that a change in the method of access is now being
contemplated, I feel, is a significant enough change to require new
consent.  Now that many of the subjects of these studies are adults, the
decision to grant access to their image and/or voice should no longer be
up to their parents or guardians; it should now be their decision alone to
make.

	Which brings us to the legal part of the discussion...

	As an attorney, there are a number of issues which come to mind
with regard to the availability of data via the Internet.  Although I have
not researched this particular question, it is safe to say that there may
be privacy issues under the Constitution (specifically, within the Bill of
Rights and the Equal Protection and Due Process clauses of the Fourteenth
Amendment), as well as issues in the areas of Tort Law, Intellectual
Property law, and Internet Technology law.  All of these issues are going
to center on the type of consent obtained, how far-reaching that consent
is or was intended to be, the type of image being disseminated, and the
safeguards and controls in place to prevent misappropriation of a person's
image or likeness and an invasion of their privacy.  Clearly, without
permission, names, faces, voices and other identifying information have to
be altered to protect the person's identity.

	Of final note is a somewhat analogous situation: Eight or nine
states, including Minnesota, Maine, and California, have recently passed
laws prohibiting the playing of audio 9-1-1 tapes in civil and/or criminal
proceedings in order to protect the privacy of the caller.  (By
introducing the audio tapes into evidence during a court proceeding, those
tapes become public records and are then available to the media for
widespread distribution.)  Although not directly on point, the question
remains if states are limiting access to audio tapes within the judicial
system, how they are going to view access via the Internet where
permission is sketchy at best.

	In conclusion, while I am all for expanded research capabilities
and access to data collections, I do not feel, either as a subject or as
an attorney, that it is prudent to use previously collected data sources
in this manner.  It is my position that there are just too many consent
and privacy issues to be concerned with when dealing with older data.  One
suggestion might be that only data collected from this point forward be
available on audio or video via the Internet, providing that appropriate
consent forms are obtained.  Furthermore, the consent forms should also be
drafted in a way which takes into account future technological advances.
Also, the eight levels of consent which were proposed by Brian MacWhinney
are not a bad idea, but would definitely need some revisions to make them
more "user-friendly" for the parents to whom they are directed.  Finally,
as for the older data collections, you might be able to include a list of
who has what data available for viewing/listening, what the contact
information is, and whether or not the data can go off-site and/or be
copied.  But I would say that the current controls would need to be
maintained in the absence of express consent from the subjects (or their
parents or legal guardians) to allow widespread (i.e.: Internet)
dissemination.

	I hope that my comments have been helpful.  If anyone has any
further questions, I can be reached on e-mail at "ABMEsq at aol.com".

Sincerely,

Allison Joy Bloom