sciencemag.org SCIENCEINSIGHTS | POLICY FORUM
at our discretion” ( 5 ). These policies appear
to be the norm. A recent study of the privacy
policies of 90 consumer genetics companies
revealed that all of the companies surveyed
included unilateral amendment provisions,
whereas only a handful promised to inform
individual users ( 6 ).
Thus, even responsible users who com-
pletely read and understand the applicable
ToS may find themselves subject to unwanted
uses of their sensitive data. Because certain
traditional health privacy laws and regula-
tions do not apply, consumers deserve legal
protections against unilateral changes to ToS.
Many countries have substantially limited
businesses’ power to unilaterally amend con-
sumer contracts. In the European Union and
the United Kingdom (UK), many unilateral
amendment provisions in existing digital
health tech contracts may be unenforceable—
for example, those that violate the UK’s Com-
petition and Markets Authority guidance on
unfair contract terms ( 7 ). The Court of Ap-
peal of Quebec prevented an internet com-
pany from reducing consumers’ bandwidth
access through a unilateral amendment, rul-
ing that it violated provincial law ( 8 ). It is
likely that consumers in these countries who
challenge unilateral amendments to digital
health tech contracts would succeed.
By contrast, in the United States, courts
have given companies substantial power to
change their ToS if those terms originally in-
cluded the right for the company to amend
the terms unilaterally. This is especially true
if consumers have the option to cancel their
services after the company notifies them
of the change in terms [e.g., ( 9 )]. There are
some limits on companies’ power to unilat-
erally amend ToS, but these exist more in
theory than in fact. Some courts say compa-
nies cannot use favorable contract terms as
bait and then switch to less favorable terms
( 10 ). And, theoretically at least, an amend-
ment could be so unfair that a court refuses
to enforce it because it is unconscionable ( 11 ).
But in reality, these sorts of legal actions are
very difficult to establish, and most consum-
ers simply will not have the resources or the
patience to assert them.
Instead, U.S. consumers could be stuck
with new terms from a company that unilat-
erally amends the terms. The consumer may
switch to a new company, but the transaction
costs of terminating services can be high.
Unilateral changes to ToS give consumers an
either-or decision: Agree to the new terms
or no longer use the company’s services. But
presenting consumers with a take-it-or-leave-
it choice—either consent to the ToS or delete
your data from the platform—puts users in
a challenging position. For better or worse,
people increasingly depend on these tech-
nologies to manage their health, particularly
if they are priced out of traditional health
care ( 12 ). Ending services could mean losing
access to valuable existing data, as well as
forgoing new insights when the company up-
dates its technologies and refines its results.
It might seem that a market could develop
for digital health tech services offering more
reliable ToS. However, complicating matters
further, the high costs of switching actually
undermine a robust, competitive market of
products offering different ToS, leaving users
with limited options for taking their busi-
ness elsewhere. And even if users decided
to switch to a company with more favorable
ToS, they would have to leave all of their pre-
vious data behind.
There is, however, a possible solution
to presenting consumers with a Hobson’s
choice, “take it or leave it,” in the wake of uni-
lateral changes to ToS. In the United States,
where this problem is most pronounced,
Congress can address this issue, as it has in
other contexts. For example, lenders who of-
fer open-ended home equity loans generally
cannot unilaterally change the price of the
loans ( 13 ). Legislators could limit the ability
of digital health tech companies to change
key aspects of their terms unless consumers
affirmatively opt in to those changes. Rather
than forcing consumers to take their business
elsewhere if they don’t like the new terms,
firms would be required to continue service
under the originally agreed terms for those
who do not approve of the new terms.
Such a law would not need to prevent
changes to every single term of the con-
tract. Prohibitions on unilateral modifica-
tions should only apply to any “substantial”
terms—a purposefully vague notion that
would encompass a variety of the most sa-
lient terms to which the consumer originally
consented. For terms that are of marginal
importance, companies should be free to
unilaterally amend the contracts as they
currently do. Using a vague standard such
as “substantial” creates uncertainty for com-
panies, but companies regularly confront
similar standards throughout their business
planning (such as requirements to perform
“due diligence” and assess only “reasonable”
fees). A vague standard offers policy ben-
efits because it keeps regulatory interven-
tions relevant in rapidly changing markets
such as digital health tech. Moreover, to the
extent that companies require certainty to
operate, a regulator could introduce a more
specific definition of “substantial” terms. For
instance, the Consumer Financial Protection
Bureau has offered guidance to companies
seeking to ascertain whether amendments
to credit card agreements are “significant
changes,” requiring the companies to pro-
vide 45 days’ advance notice to cardholders
of the change ( 14 ).Companies could also still amend the sub-
stantial terms of their contracts, but they
would need to do so in the same way that
most commercial contracts are amended—
through actual consent. Although it may
seem complicated to have different terms for
different users, digital health tech companies
already give their customers certain options,
such as whether to be included in the com-
pany’s database or to participate in research.
They could use similar mechanisms to obtain
consent for substantial changes to their ToS.
Additionally, although many other coun-
tries currently offer more consumer-friendly
laws, these countries may wish to modify
existing legal rules to address unilateral
amendments in the digital health tech
arena. Consumers are then not dependent
on generic provisions or court opinions.
That said, limiting the ability of companies
to unilaterally change their ToS won’t solve
all the possible issues that consumers may
face. In fact, too rigid a prohibition on uni-
lateral amendments could impede valuable
innovation in ToS, and even in products and
services, as companies respond to changing
norms, new technologies, and opportunities.
Nonetheless, both in the United States and
internationally, efforts to hold companies
accountable for their ToS and to limit their
ability to unilaterally change those terms
without notifying users could offer consum-
ers much-needed protection in digital health
tech and related industries. jREFERENCES AND NOTES- Clue (2019); https://helloclue.com.
- TalkSpace Privacy Policy (1 December 2018);
http://www.talkspace.com/public/privacy-policy. - AncestryDNA Terms and Conditions (25 July 2019);
http://www.ancestry.com/cs/legal/termsandconditions#
Modifications. - 23andMe Terms of Service (2019); http://www.23andme.com/
about/tos/. - FLO Living Privacy Policy (May 2018);
http://www.floliving.com/legal/. - J. W. Hazel, C. Slobogin, Cornell J. Law Public Policy 28 ,
35 (2018). - A. M. Phillips, Buying Your Self on the Internet (Edinburgh
Univ. Press, 2019). - Vidéotron c. Union des consommateurs, 2017 QCCA 738
(CanLII); http://www.canlii.org/fr/qc/qcca/doc/2017/
2017qcca738/2017qcca738.html. - Herrington v. Union Planters Bank N.A., 113 F. Supp. 2d
1026, 1032 (S.D. Miss. 2000), aff’d sub nom. Herrington
v. Union Planters Bank, 265 F.3d 1059 (5th Cir. 2001). - Rossman v. Fleet Bank (R.I.) Nat. Ass’n, 280 F.3d 384,
398 (3d Cir. 2002). - Powertel Inc. v. Bexley, 743 So. 2d 570, 575 (Fla. Dist. Ct.
App. 1999). - J. Morrissey, “Looking to Technology to Avoid Doctors’
Offices and Emergency Rooms.” N .Y. T i m e s (21 February
2019); http://www.nytimes.com/2019/02/21/business/
medical-technology-ai-tests.html. - E. A. Horwitz, Univ. Miami Bus. Law Rev. 15 , 75 (2007).
- 75 Fed. Reg. 7658 (22 February 2010); http://www.federal-
register.gov/documents/2010/02/22/2010-624/
truth-in-lending.
ACKNOWLEDGMENTS
We thank C. Guerrini, L. Fowler, N. Ram, and D. T. Rave for their
comments and A. Ahmad for research assistance.10.1126/science.aaz6732746 14 FEBRUARY 2020 • VOL 367 ISSUE 6479
Published by AAAS