Quality of Life Research, 5, pp. 568-571
Comment
The Internet: A modern Pandora’s Box?
M. Mayer and J. E. Till*
Division of Epidemiology and Statistics, The Ontario Cancer Institute, Toronto,
Ontario (J. E. Till)
Two different views of the Internet are presented.
One is from the perspective of an author who has
written a personal account of her own breast cancer
experience, while the other is from the perspective
of a cancer researcher who is interested in quality
of life research. The article is written in a format
that reflects the somewhat informal style of mes-
sages sent to Internet discussion groups. For better
or worse, the Internet has arrived as a force in our
lives, and medical information and support consti-
tute two of its more important uses. Both authors
agree that the novel medium of the Internet provides
a unique opportunity to create a true partnership
of health care providers and consumers.
Key words: Communication: Internet; psychosocial
support; quality of life.
Introduction
‘Pandora’s Box’ (or, more precisely, Pandora’s ‘stone-
jar” or ‘great vase”) has been defined as ‘a process
that once activated will generate many unmanageable
problems’. The Internet is regarded by some in much
the same way. For example, Coiera has outlined
several challenges that the Internet presents, both to
users and suppliers of information on health and
disease. Among these is a concern about ‘the
mismatch in the speed with which new scientific
results can be disseminated and the length of time
required for careful peer review’.3 Kassirer and Angel1
have commented that ‘. . . medicine is not physics:
the wide circulation of unedited preprints in physics
is unlikely to have an immediate effect on the public’s
J. E. Till’s Internet access was su ported b an Eli Lilly-NCIC
Award from the National Cancer nstltute o r Y Canada.
l To whom correspondence should be addressed at the
Division of Epidemiology & Statistics, The Ontario Cancer
Institute, 610 University Avenue, Room 9-416, Toronto,
Ontario, Canada M5G 2M9. Tel: (+l) 416 946 2948; Fax:
(+l) 416 946 2024; email: (M. Mayer) musa@echonyc.com
(J. Till) till@oci.utoronto.ca.
568 Qualrty of Life Research Vol.5 1996
well-being even if the material is biased or false. In
medicine, such a practice could have unintended
consequences that we would all regret’.4
The purpose of this article is to provide some views
of the Internet from two different perspectives. Musa
Mayer, the author of a personal account of her breast
cancer experience, Examining Myself, 5 is currently at
work on a book about the lives of metastatic breast
cancer patients and their families who participate in
the Breast-Cancer Listserv on the Internet.6 Jim ‘Ii11 is
a biophysicist and epidemiologist who has made a
number of contributions to cancer research, ranging
from stem-cell biology to quality of life research.7*8
This commentary is written in the form of answers,
from each author’s perspective, to a series of
questions about the Internet. While we had originally
intended to edit out the questions, and combine our
answers into a conventional manuscript, we decided
to retain the question-and-answer format, because
we believe that the differences between our perspec-
tives (and our writing styles) has become an
important component of the article, and preserves
the format of an Internet discussion group.
Question 1: How would you describe the
Internet?
Milsa Mayer: Like most people on line, I’ve found
one corner of this vast network to call home. As a
memoirist and former therapist, I have a keen interest
in people’s stories, particularly illness narratives.
Teaching memoir writing, and offering writing work-
shops to cancer patients, I‘ve become convinced that
self-reflective writing is a potent way of bringing
meaning and structure to the chaos of daily life, and
coming to terms with traumatic events. The Internet,
through its various types of discussion groups, like
the Breast-Cancer Listserv Jim and I participate in,6
has created a spontaneous interactive and intensely
personal medium of expression, introspection,
support and information sharing.
lim Till: I regard the Internet from a scientist’s
perspective, as a global network of computers that
is evolving rapidly.’ It provides a new medium for
@ 1996 Rapid Sclence Pubhshers

The Internet: A modern Pandora’s Box?
communication that will affect individuals (and
communities and societies) in ways that are novel
and intriguing.” How it is used is what interests me,
not the technical aspects of how packets of informa-
tion migrate from Point A to Point 8. However, I do
still marvel at the fact that, (if I don’t send the message
at a time when the Internet is very busy), it takes
only a fraction of second longer for an email message
to reach one member of my family, in Australia, than
it does to reach another, located nearby in Toronto!
The Internet does, indeed, reduce geographic barriers
dramatically.”
Question 2: What do you like best about the
Internet?
Musa Mayer: Although I’ve never been much of a
letter writer in the past, I’ve taken easily to email as
a favourite form of nearly instantaneous communi-
cation. In addition to staying in touch with friends
and sharing information across the globe, I find myself
exploring various new short literary forms, taking
the guise of brief essays, poetry and other epistolary
musings, happy in the knowledge that like-minded
people will respond with their own efforts. For an
author accustomed to the isolation of the print medium,
where feedback from readers is rare, and much
delayed, this is a great and rather addictive pleasure.
I’ve cut down the time needed for my writing
research to an absolute minimum by making use of
the various resources on the Internet. Recently, I’ve
been having the uniquely satisfying experience of
interviewing people on line for a new book, at our
mutual convenience, and without regard to geographic
distance or other constraints. For me to conduct inter-
views with seriously ill people in any other way would
be problematic. The logistic advantages of this are
obvious. Apart from this, I’ve met many people that in
my daily life I would never have run across, in a
number of different countries, including my co-author.
]irn Till: I use email a great deal, for both professional
and personal uses. Professional uses have included
several collaborative research projects carried out, via
email, over the past decade. This has included the
development of applications for research grants,
analyses of data, and the preparation of reports for
publication, including this one. I seldom write ‘snail-
mail’ letters any more, but rely increasingly on the
Internet for communication with those colleagues,
family and friends who have access to email.
I have also had extensive experience, over the past
two years, with Listserv-based email discussion groups
(such as the Breast-Cancer discussion group6,‘2), and
with some of the archives of cancer-related informa-
tion that can be reached via the World Wide Web.6,‘2
Question 3: What about ‘patient support
groups’ on the Internet?
Mllsa Mayer: Patient support groups like the Breast-
Cancer Listserv help people make sense of their
medical circumstances, and make better-informed,
wiser choices They also seem to help with emotional
coping. Anewly biopsied patient posting her pathology
report may receive an explanation from a participat-
ing physician on what the terminology means,
commiseration and support from others with a
similar diagnosis, who share their own experiences
and treatment choices, and references to other
resources that may help her understand her illness.
People who are isolated by illness, especially those
who are homebound or in remote locations, can feel
a real sense of connection as they give and receive
compassionate friendship and advice through ex-
changing public and private email. As an adjunct to
medical care and face-to-face support groups, this
unique format helps people with chronic and life-
threatening illnesses cope far better than they might
otherwise. In the two years I’ve been on the Breast-
Cancer Listserv, hundreds of breast cancer patients
and their families have expressed profound gratitude
for the support and information they’ve received.
Jim Till: Those I like best are the long-distance support
groups that can be reached only by email, like the
Breast-Cancer Listserv. Such groups are available to
anyone who has access to email, and don’t require
anything more sophisticated than that, such as access
to the World Wide Web. Also, because they require
a subscription, they are less likely to attract the
attention of people who are simply ‘surfing the Net’
in a superficial way Finally, they can be very active.
The Breast-Cancer Listserv, located in St. John’s,
Newfoundland, had about 960 total subscribers (with
about 50% of them active subscribers, actually
accepting ‘mail’ from the Listserv) in late September,
1996. Its subscribers were located in at least 32
different countries (although, of the total, about 75%
of subscribers had email addresses identified with
the USA, and about seven per cent identified with
Canada). It distributes up to 150 messages per day
to its active subscribers. Perhaps because of their
‘busyness’, such lists tend to retain only truly dedi-
cated active members. Many subscribers regard ‘their
list’ as a safe and private place, and are very frank
and open about their concerns and experiences.
This frankness has both advantages and disadvan-
tages. An advantage is that subscribers quickly come
to regard themselves as members of a close-knit ‘virtual
community’. An important disadvantage is that this
‘virtual community’ is, in fact, a very public one, not
a private one. For example, messages sent to the
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