That’s My Baby: Why the State’s Interest in Promoting Public Health Does Not Justify Residual Newborn Blood Spot Research Without Parental Consent

420 MINNESOTA LAW REVIEW [98:419 tests for a variety of conditions that can be effectively treated through early detection.6 Beleno sued TDSHS when she learned the state was storing newborn blood samples (NBS)7 “indefinitely” for research unrelated to the initial screening.8 Beleno did not object to the initial screening.9 What she found problematic was the potentially “indefinite” retention of her son’s genetic material and the unknown and undisclosed uses of the NBS.10 Two other recent lawsuits and a series of interviews demonstrate she is not alone in her concerns.11 Beleno worried about the misuse of her son’s genetic information, such as in future employment or insurance discrimination.12 Beleno’s experience is not unusual given that all fifty states operate newborn screening programs.13 Proponents of the programs argue they are an important public health tool because they facilitate early detection of certain genetic diseases. 14 Mandatory Versus Voluntary Consent for Newborn Screening?, 20 KENNEDY INST. ETHICS J. 299, 300–02 (2010). For example, the major consequence of Phenylketonuria 6. See, e.g., KILAKKATHI, supra note 2, at 10 (relating the “numerous personal stories from parents whose children are able to lead normal, healthy lives because of early screening and treatment of various genetic conditions”). 7. Throughout this Note “NBS” will be used to refer to the synonymous terms “newborn blood samples” and “newborn blood spots.” 8. First Amended Complaint ¶ 12, Beleno v. Tex. Dep’t of State Health Servs., No. SA-09-CA-0188-FB (W.D. Tex. dismissed Dec. 14, 2009), 2009 WL 5072239 [hereinafter Beleno Complaint]. 9. Id. ¶ 15. 10. Id. ¶ 15–16. 11. See, e.g., Bearder v. State, 806 N.W.2d 766, 776 (Minn. 2011) (holding that the state statute regulating newborn blood tests does not authorize residual use and dissemination of NBS); Complaint ¶ 8, Higgins v. Tex. Dep’t of State Health Servs., 801 F. Supp. 2d 541 (W.D. Tex. 2011) (No. 510-cv-00990) [hereinafter Higgins Complaint] (claiming the State “knowingly, deceptively . . . and without the knowledge or consent of the infants’ parents, sold . . . and distributed [NBS] . . . to . . . third parties”); Erin Rothwell et al., Assessing Public Attitudes on the Retention and Use of Residual Newborn Screening Blood Samples: A Focus Group Study, 74 SOC. SCI. & MED. 1305, 1307 (2012) (compiling parents’ opinions about residual NBS retention and use). 12. Beleno Complaint, supra note 8, ¶ 16. 13. See KILAKKATHI, supra note 2, at 29–37 for a chart with each state’s newborn screening program policies. 14. See, e.g., Rothwell et al., supra note 11, at 1305 (noting that “NBS is a core service for public health” and that testing “identif[ies] infants at high ris