Science - USA (2022-02-04)

SCIENCE science.org

ILLUSTRATION: SEBAS.IANHR/SHUTTERSTOCK

4 FEBRUARY 2022 • VOL 375 ISSUE 6580 501

Transparency and effi ciency

By automating data-sharing agreements,

smart contracts can address long-standing

inefficiencies and the lack of transparency

in HIE ( 6 ) and may give rise to a market-

place of third-party user platforms that

allow patients to consult an intuitive pub-

lic ledger of transactions involving their

PHI. With the right safeguards in place,

patient-oriented industries might emerge

for tracking and aggregating a patient’s au-

thenticated data and for providing proxy

management of smart contracts on their

behalf. Other types of new marketplaces

might emerge as well. Advanced data-

sharing agreements and contracts might

enable the securitization of multiple NFTs

into derivatives, which might lead to in-

novative markets. Experiences from the

financial sector and the particular sensi-

tivity of health applications

point out the need for robust

and proactive regulatory safe-

guards of such innovation.

Conversely, data requesters

could benefit from easy verifi-

cation of the authenticity and

provenance of health data, as

well as automated and stream-

lined data procurement. Each

user, for instance, a prespeci-

fied set of research institutes,

would be granted a particular

access level according to the

smart contract terms, and re-

quests for data access could

be made transparent. A PHI-

specific blockchain (or set of

interoperable blockchains)

could ensure accountability by

making available a patient-ac-

cessible index of requester identities while

maintaining the pseudonymity of patients’

IDs. This incorporation of “privacy by de-

sign” automation and pseudonyms lends

NFT-type technologies their capacity to

deidentify patient data and allows patients

to participate in data-sharing decisions

while making it easier for companies and

institutions to access information about a

subject without strongly increasing risk of

reidentification. At least some of the in-

formation could be contained in metadata

to flag certain PHI with substantial mar-

ket value (e.g., genomic information from

patients with rare diseases, patients on a

newly approved medication, participants

in particular clinical trials).

CHALLENGES

Data security and privacy

Blockchain technology upon which NFTs

are built does not necessarily prevent data

breaches because digital information itself

is not stored “on-chain.” This leaves only

the metadata (the NFTs) on-chain, protect-

ing information integrity regarding data

provenance, terms of data exchange, and

transaction history. The underlying data

pointed to by NFTs—the PHI—are only as

secure as the practices and procedures of

the myriad online platforms that provide

health-data storage and access. Without

proper digital security and data encryption

infrastructure or technological advance-

ments to counter the gradual accumulation

of noncritical failures in data storage (i.e.,

“bit rot”), a NFT could eventually amount

to nothing more than a defunct URL.

High-stakes NFTs are thus increasingly

stored in decentralized and highly redun-

dant networks like the InterPlanetary File

System (IPFS). These systems reduce server

resources and costs and provide multiple

sources of backup. Already, the NFT mar-

ket has led to the emergence of third-party

“pinning” platforms that afford digital

content greater longevity, along with other

data safekeeping solutions that are likely to

affect digital security more broadly and to

relieve high processing costs. Additionally,

new blockchain protocols (notably Solana

and Fantom at the time of writing) are rap-

idly evolving to accommodate scalable on-

chain storage with high throughput while

also keeping energy costs down. Likewise,

Arweave has introduced “blockweaves” (as

opposed to “chains”) to incentivize nodes

to ensure data replicability and permanent

storage. These advancements improve data

security, permanence, and scalability and

potentially enable “a multichain future”

where chains can specialize and interop-

erate to support high-performance smart

contract platforms. However, they also

carry other legal and ethical concerns re-

lated to the right to erase or to rectify inac-

curacies in personal data ( 7 ), which the im-

mutable nature of blockchain technology

and decentralized storage might render

functionally difficult to exercise.

Another challenge is that the privacy-

by-design feature of pseudonymity, which

is so central to NFTs and blockchain, may

be limited when pseudonyms are attached

to health data. Many health data are be-

coming so granular as to constitute digital

“fingerprints” for which only a few data

elements could allow for patient reiden-

tification ( 8 ). For NFTs to truly maintain

pseudonymity, they must be supported

with advancements in data encryption, for

example, helping “hash” data before they

reach human eyes (if they ever do).

In addition to technological advance-

ments, NFT data security and protection

concerns need to be addressed on a global

stage and through regulatory

means. The European Union

(EU) General Data Protection

Regulation (GDPR), for in-

stance, imposes strict obliga-

tions for processing personal

data and requires procedural

safeguards to avoid and re-

spond to data breaches and

misuses ( 9 ). Although progress

is being made in the United

States (e.g., the California

Consumer Privacy Act) and

federal-level reforms are being

debated ( 10 ), the US “patch-

work” regulatory approach

varies widely by state and cir-

cumstance and continues to

lag behind the GDPR ( 11 ).

The EU-US Privacy Shield

arrangement for cross-border

flow of PHI was invalidated ( 12 ) in large

part because of the fact that US regula-

tion offers limited opportunities for legal

redress for noncitizens. NFTs could help

repair these agreements by helping to fill

gaps in the capacity of individuals to seek

legal redress in at least two ways. The first

and most straightforward way is by con-

cretizing a set of terms by which an indi-

vidual (dis)agrees to contractually share

PHI with certain other entities. Like other

legally binding private contracts between

individuals and entities, if those terms are

clearly stated and thoroughly cover a wide

range of possible data-sharing scenarios

(including definitions of breach), and if the

terms of NFT smart contracts are mutually

recognized by governing bodies relevant

to the jurisdictions in which PHI is being

exchanged, then smart contracts should

constitute a legally binding mechanism

for seeking redress in cases where PHI ex-

changes break the terms of the contract.