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Journal of Law and Policy

Authors

Luke Isaac Haqq

First Page

1

Abstract

This Article introduces an underappreciated space in which protected health information (“PHI”) remains largely unprotected, a fact that will become only more problematic as clinical medicine increasingly turns to genomics. The past decade has seen significant advances in the prevention of birth defects, especially with the introduction of clinical preconception, prenatal, and neonatal genomic sequencing. Parental access to the results of embryonic and fetal clinical sequencing is critical to reproductive autonomy; results can provide parents with important considerations in determining whether to seek or avoid conception, as well as in deciding whether to carry a pregnancy to term. The information can also prepare parents for the anticipated accommodations necessary for raising a child affected by complications from congenital disease. PHI retrieval in the perinatal context, however—from prenatal testing to state-run newborn screening programs—raises important concerns, especially in light of their growing reliance on genomic data: Roe v. Wade clearly recognizes that individuals critically accrue legal rights only upon birth, and neither federal law nor the law in most states recognizes that children have any inviolable privacy or autonomy rights to their PHI.This Article notes potential tensions between protecting PHI from the embryonic stage onward and the federal reproductive rights and federal and state statutory conceptions of PHI, but ultimately emphasizes that protecting PHI in utero adds an important layer of ex post protection for individuals who are actually born that need not conflict with a parent’s reproductive autonomy ex ante. The concerning lack of protection of PHI in utero is mounting in light of biotechnological advancements in genomic sequencing generating large quantities of data, and as a genomic healthcare system built on such information becomes a reality. This Article proposes protecting PHI as early on as embryonic stages by keeping it within a black box, opaque to unauthorized parties but transparent in relevant part when authorized parties request information relevant to decisions like abortion or childcare in minority. Such a proposal for a greater role of a best-interests standard in PHI protections merits discussion as a first step in imagining a landscape that protects PHI throughout an individual’s lifetime.

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