American Medical Association. (2019). Code of Medical Ethics Opinion 10.7.1. www.ama-assn.org/delivering-care/ethics/ethics-consultations#targetText=Code%20of%20Medical%20Ethics%20Opinion,and%20the%20health%20care%20team.&targetText=(a)%20Seek%20to%20balance%20the,the%20patient’s%20needs%20and%20valuesGoogle Scholar

American Society for Bioethics and Humanities (ASBH). (2011). Core Competencies for Healthcare Ethics Consultation, 2nd ed. Glenview, IL: American Society for Bioethics and Humanities.Google Scholar

American Society for Bioethics and Humanities (ASBH). (2015). Improving Competencies in Clinical Ethics Consultation: An Education Guide, 2nd ed. Chicago: American Society for Bioethics and Humanities.Google Scholar

Beauchamp, TL, Childress, JF (2019). Principles of Biomedical Ethics. New York: Oxford University Press.Google ScholarPubMed

Fletcher, C, Siegler, M (1996). What are the goals of ethics consultation? A consensus statement. Journal of Clinical Ethics; 7(2): 122–126.CrossRefGoogle ScholarPubMed

HCEC Certification Commission. (n.d.). Healthcare Ethics Consultant-Certified Program. https://asbh.org/certification/hcec-certificationGoogle Scholar

Hester, DM. (2008). Ethics by Committee. Lanham, MD: Rowman & Littlefield Publishers, Inc.Google Scholar

Jonsen, A, Siegler, M, Winslade, WJ (2015). Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 8th ed. New York: McGraw-Hill.Google Scholar

Lo, B (1987). Behind closed doors. The New England Journal of Medicine, 317(1): 46–50.CrossRefGoogle ScholarPubMed

Tarzian, AJ, Wocial, L, The ASBH Clinical Ethics Consultation Affairs Committee. (2015). A code of ethics for health care ethics consultants: Journey to the present and implications for the field. The American Journal of Bioethics, 15(5): 38–51.CrossRefGoogle Scholar

Wilkinson, D, Truog, R (2015). In favour of medical dissensus: Why we should agree to disagree about end-of-life decisions. Bioethics, 30(2): 109–118.CrossRefGoogle ScholarPubMed

Jonsen, AR, Siegler, M, Winslade, WJ (2015). Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 8th ed. New York: McGraw Hill.Google Scholar

National Center for Ethics in Health Care. (2015). Ethics Consultation: Responding to Ethics Questions in Health Care, 2nd ed. Washington, DC: US Department of Veterans Affairs.Google Scholar

Shelton, W, Bjarnadottir, D (2008). Ethics consultation and the committee. In Hester, DM, ed., Ethics by Committee: A Textbook on Consultation, Organization, and Education for Hospital Ethics Committees. Lanham, MD: Rowman & Littlefield, 49–77.Google Scholar

Spike, J (2012). Ethics consultation process. In Hester, DM and Schonfeld, TL, eds., Guidance for Healthcare Ethics Committees. Cambridge University Press, 41–47.Google Scholar

Beach, MC, Sugarman, J (2019). Realizing shared decision-making in practice. JAMA, 322(9): 811–812.CrossRefGoogle ScholarPubMed

Berg, JW (2003). Understanding waiver. Houston Law Review, 40(2): 281–344.Google Scholar

Berg, JW (2012). All for one and one for all: Informed consent and public health. Houston Law Review, 50(1): 1–40.Google Scholar

Berg, JW, Appelbaum, PS, Grisso, T (1996). Constructing competence: Formulating standards of legal competence to make medical decisions. Rutgers Law Review, 48(2): 345–396.Google ScholarPubMed

Berg, JW, Appelbaum, PS, Lidz, C, Parker, L (2001). Informed Consent: Legal Theory and Clinical Practice, 2nd ed. New York: Oxford University Press.CrossRefGoogle Scholar

Paladino, J, Lakin, JR, Sanders, JJ (2019). Communication strategies for sharing prognostic information with patients. JAMA, 322(14): 1345–1346.CrossRefGoogle ScholarPubMed

American Academy of Pediatrics (2009). Policy statement – using personal health records to improve the quality of health care for children. Pediatrics, 124(1): 403–409.Google Scholar

American Academy of Pediatrics (2012). Policy statement – standards for health information technology to ensure adolescent privacy. Pediatrics, 130(5): 987–990.CrossRefGoogle Scholar

Ancker, JS, Mauer, E, Kalish, RB, Vest, JR, Gossey, JT (2019). Early adopters of patient-generated health data upload in an electronic patient portal. Applied Clinical Informatics, 10(2): 254–260.Google Scholar

Bourgeois, FC, DesRoches, CM, Bell, SK (2018). Ethical challenges raised by OpenNotes for pediatric and adolescent patients. Pediatrics, 141(6): e20172745.Google Scholar

Cushman, R, Froomkin, AM, Cava, A, Abril, P, Goodman, KW (2010). Ethical, legal and social issues for personal health records and applications. Journal of Biomedical Informatics, 43(5 Suppl.): S51–S55.CrossRefGoogle ScholarPubMed

Goodman, KW (2016). Ethics, Medicine and Information Technology: Intelligent Machines and the Transformation of Health Care. Cambridge University Press.Google Scholar

Miklin, DJ, Vangara, SS, Delamater, AM, Goodman, KW (2019). Understanding of and barriers to electronic health record patient portal access in a culturally diverse pediatric population. JMIR Medical Informatics, 7(2): e11570.CrossRefGoogle Scholar

Neuner, J, Fedders, M, Caravella, M, Bradford, L, Schapira, M (2015). Meaningful use and the patient portal: Patient enrollment, use, and satisfaction with patient portals at a later-adopting center. American Journal of Medical Quality, 20(2): 105–113.CrossRefGoogle Scholar

Steitz, B, Cronin, RM, Davis, SE, Yan, E, Jackson, GP (2017). Long-term patterns of patient portal use for pediatric patients at an academic medical center. Applied Clinical Informatics, 8(3): 779–793.Google ScholarPubMed

US Department of Health and Human Services. (2015). The HIPAA Privacy Rule. www.hhs.gov/hipaa/for-professionals/privacy/index.htmlGoogle Scholar

US Department of Health and Human Services. (2017). Summary of the HIPAA Privacy Rule. www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.htmlGoogle Scholar

Zhao, JY, Song, B, Anand, E, et al.. Barriers, facilitators, and solutions to optimal patient portal and personal health record use: A systematic review of the literature. AMIA Annual Symposium Proceedings: 1913–1922.Google Scholar

American Bar Association Commission on Law and Aging. (2021, April 20). Capacity Assessment. www.americanbar.org/groups/law_aging/resources/capacity_assessmentGoogle Scholar

Appelbaum, PS (2007). Assessment of patients’ competence to consent to treatment. New England Journal of Medicine, 357(18): 1834–1840.CrossRefGoogle ScholarPubMed

Brock, DW, Wartman, SA (1990). When competent patients make irrational choices. New England Journal of Medicine, 322(22): 1595–1599.Google Scholar

Buchanan, AE, Brock, DW (1989). Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge University Press.Google Scholar

Cruzan v. Director of Missouri Department of Health. (1990), 497 US 261, 110 S.Ct. 2841, 111 L.Ed. 2d. 224.Google Scholar

Derse, AR, Schiedermayer, DL (2015). Practical Ethics for Students, Interns & Residents, 4th ed. Hagerstown, MD: University Publishing Group.Google Scholar

Ganzini, L, Volicer, L, Nelson, W, Derse, AR. (2003). Pitfalls in assessment of decision-making capacity. Psychosomatics, 44(3): 237–243.CrossRefGoogle ScholarPubMed

Ganzini, L, Volicer, L, Nelson, WA, Fox, E, Derse, AR (2005). Ten myths about decision-making capacity. Journal of the American Medical Directors Association, 6(3 Suppl.): S100–S104.CrossRefGoogle ScholarPubMed

Folstein, MF, Folstein, SE, McHugh, PR (1975). “Mini-mental state.” A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12(3): 189–198.Google Scholar

Joint Centre for Bioethics. (n.d.). Aid to Capacity Evaluation (ACE). http://128.100.72.105/tools/documents/ace.pdfGoogle Scholar

Nasreddine, ZS, Phillips, NA, Bédirian, V, et al. (2005). The Montreal Cognitive Assessment, MoCA: A brief screening tool for mild cognitive impairment. Journal of the American Geriatrics Society, 53(4): 695–699.CrossRefGoogle Scholar

President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. (1992). Making Health Care Decisions, Vol. 1. https://repository.library.georgetown.edu/handle/10822/559354Google Scholar

Roth, LH, Meisel, A, Lidz, CW (1977). Tests of competency to consent to treatment. American Journal of Psychiatry, 134(3): 279–284.Google ScholarPubMed

Alper, E, O’Malley, TA, Greenwald, J (2017). Hospital discharge and readmission. www.uptodate.com/contents/hospital-discharge-and-readmissionGoogle Scholar

American Medical Association. (2021). AMA Principles of Medical Ethics. www.ama-assn.org/about/publications-newsletters/ama-principles-medical-ethicsGoogle Scholar

Barnett, AG, Page, K, Campbell, M, et al. (2013). The increased risks of death and extra lengths of hospital and ICU stay from hospital-acquired bloodstream infections: A case–control study. BMJ Open, 3(10). doi.org/10.1136/bmjopen-2013-003587Google Scholar

Essex, R, Isaacs, D (2018). The ethics of discharging asylum seekers to harm: A case from Australia. Bioethical Inquiry, 15(1): 39–44.CrossRefGoogle Scholar

Hill, J, Filer, W (2015). Safety and ethical considerations in discharging patients to suboptimal living situations. AMA Journal of Ethics, 17(6): 506–510.Google Scholar

Jankowski, J, Seastrum, T, Swidler, RN, Shelton, W (2009). For lack of a better plan: A framework for ethical, legal, and clinical challenges in complex inpatient discharge planning. HEC Forum, 21(4): 311–326.CrossRefGoogle Scholar

Milliken, A, Jurchak, M, Sadovnikoff, N (2018). When societal structural issues become patient problems: The role of clinical ethics consultation. Hastings Center Report, 48(5): 7–9.CrossRefGoogle ScholarPubMed

Parsi, K (2012). Complex discharges and undocumented patients: Growing ethical concerns. The Journal of Clinical Ethics, 23(4): 299–307.Google Scholar

Schlairet, MC (2013). Complex hospital discharges: Justice considered. HEC Forum, 26(1): 69–78.CrossRefGoogle Scholar

Swidler, RS, Seastrum, T, Shelton, W (2007). Difficult inpatient discharge decisions: Ethical, legal, and clinical practice issues. The American Journal of Bioethics, 7(3): 23–28.CrossRefGoogle ScholarPubMed

American Society for Bioethics and Humanities [ASBH], Clinical Ethics Consultation Affairs Committee. (2017). Addressing Patient-Centered Ethical Issues in Health Care: A Case-Based Study Guide. Chicago: ASBH.Google Scholar

Buchanan, AE, Brock, DW (1989). Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge University Press.Google Scholar

Cunningham, TV, Chatburn, A, Coleman, C, et al. (2019). Comprehensive quality assessment in clinical ethics. The Journal of Clinical Ethics, 30(3): 284–296.CrossRefGoogle ScholarPubMed

Davidson, JE, Aslakson, RA, Long, AC, et al. (2017). Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Critical Care Medicine, 45(1): 103–128.Google Scholar

DeMartino, ES, Dudzinkski, D, Doyle, CK, et al. (2017). Who decides when a patient can’t? Statutes on alternate decision makers. New England Journal of Medicine, 376(15): 1478–1482.Google Scholar

Harris, KW, Cunningham, TV, Hester, DM, et al. (2020, November). Comparison is not a zero-sum game: Exploring advanced measures of healthcare ethics consultation. AJOB Empirical Bioethics E-pub.CrossRefGoogle Scholar

Homan, ME (2018). Factors associated with the timing and patient outcomes of clinical ethics consultation in a Catholic health care system. The National Catholic Bioethics Quarterly, 18(1): 71–92.CrossRefGoogle Scholar

Kon, AA, Davidson, JE, Morrison, W, Danis, M, White, DB. (2016). Shared decision making in intensive care units: An American college of critical care medicine and American Thoracic Society policy statement. Critical Care Medicine, 44(1): 188–201.CrossRefGoogle ScholarPubMed

Pope, TM, Bennett, J, Carson, SS, et al. (2020). Making medical treatment decisions for unrepresented patients in the ICU: An official American Thoracic Society/American Geriatrics Society policy statement. American Journal of Respiratory and Critical Care Medicine, 201(10): 1182–1192.Google Scholar

Shalowitz, DI, Garrett-Mayer, E, Wendler, D. (2006). The accuracy of surrogate decision makers: A systematic review. Archives of Internal Medicine, 166(5): 493–497.CrossRefGoogle ScholarPubMed

Welch, LC, Teno, JM, Mor, V (2005). End-of-life care in black and white: Race matters for medical care of dying patients and their families. Journal of the American Geriatrics Society, 53(7): 1145–1153.Google Scholar

Wendler, D, Rid, A (2011). Systematic review: The effect on surrogates of making treatment decisions for others. Annals of Internal Medicine, 154(5): 336–346.Google Scholar

Compassion and Choices. (n.d.). In Your State. https://compassionandchoices.org/take-action/in-your-state/.Google Scholar

Cruzan v. Director, Missouri Department of Health. (1990). 110 S.Ct. 2841.Google Scholar

Gostin, LO (2005). Ethics, the constitution, and the dying process: The case of Theresa Marie Schiavo. Journal of the American Medical Association, 293(19): 2403–2407.CrossRefGoogle ScholarPubMed

Hammes, BJ, Rooney, BL, Gundrun, JD (2010). A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. Journal of the American Geriatrics Society, 58(7): 1249–1255.Google Scholar

Hunt, LM (2019). Beyond cultural competence: Applying humility to clinical settings. In Oberlander, J et al., eds., The Social Medicine Reader, 3rd ed., vol. II. Durham, NC: Duke University Press, 127–131.Google Scholar

Lehmann, CU, Petersen, P, Bhatia, H, Berner, ES, Goodman, KW (2019). Advance directives and code status information exchange: A consensus proposal for a minimum set of attributes. Cambridge Quarterly of Healthcare Ethics, 28(1): 178–185.CrossRefGoogle ScholarPubMed

Moskop, JC (2016). Ethics and Health Care: An Introduction. Cambridge University Press.CrossRefGoogle Scholar

National Hospice and Palliative Care Organization. (n.d.). Caring Connections. www.caringinfo.org/.Google Scholar

POLST: Portable Medical Orders. (n.d.). POLST State Programs. https://polst.org/state-programs/.Google Scholar

In re Quinlan (1976). 70 N.J. 10, 355 A.2d 647.Google Scholar

Wolf, SM, Berlinger, N, Jennings, B (2015). Forty years of work on end of life care – from patients’ rights to systemic reform. New England Journal of Medicine, 372(7): 678–682.CrossRefGoogle ScholarPubMed

Yadav, KN, Gabler, NB, Cooney, E, et al. (2017). Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Affairs (Millwood), 36(7): 1244–1251.CrossRefGoogle ScholarPubMed

American Medical Association. (1999). Medical futility in end-of-life care: Report of the Council on Ethical and Judicial Affairs. JAMA, 281(10): 937–941.CrossRefGoogle Scholar

Bosslet, GT, Pope, TM, Rubenfeld, GD, et al. (2015). An official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. American Journal of Respiratory and Critical Care Medicine, 191(11): 1318–1330.CrossRefGoogle ScholarPubMed

Cunningham, TV, Scheunemann, LP, Arnold, RM, White, D (2018). How do clinicians prepare family members for the role of surrogate decision-maker? Journal of Medical Ethics, 44(1): 21–26.CrossRefGoogle ScholarPubMed

Joseph, R (2011). Hospital policy on medical futility: Does it help in conflict resolution and ensuring good end-of-life care? Annals of the Academy of Medicine, Singapore, 40(1): 19–25.CrossRefGoogle ScholarPubMed

Luce, JM (2010). A history of resolving conflicts over end-of-life care in intensive care units in the United States. Critical Care Medicine, 38(8): 1623–1629.CrossRefGoogle ScholarPubMed

Pope, TM (2007). Medical futility statutes: No safe harbor to unilaterally refuse life-sustaining medical treatment. Tennessee Law Review, 75(1): 1–81.Google Scholar

Pope, TM (2010). Surrogate selection: An increasingly viable, but limited, solution to intractable futility disputes. St. Louis University Journal of Health Law and Policy, 3(2): 183–252.Google Scholar

Pope, TM (2017). Brain death forsaken: Growing conflict and new legal challenges. Journal of Legal Medicine, 37(3–4): 265–324.Google Scholar

Rosoff, PM (2013). Institutional futility policies are inherently unfair. HEC Forum, 25(3): 191–209.Google Scholar

Schneiderman, LJ, Jecker, NS (2011). Wrong Medicine: Doctors, Patients, and Futile Treatment, 2nd ed. Baltimore, MD: Johns Hopkins University Press.CrossRefGoogle Scholar

Truog, R, Brett, AS, Frader, J (1992). The problem with futility. New England Journal of Medicine, 326(23): 1560–1564.Google Scholar

Wilkinson, DJ, Savulescu, J (2011). Knowing when to stop: Futility in the ICU. Current Opinions in Anaesthesiology, 24(2): 160–165.CrossRefGoogle ScholarPubMed

Zier, LS, Burack, JH, Micco, G, Chipman, AK, Frank, JA, White, DB (2009). Surrogate decision makers’ responses to physicians’ predictions of medical futility. Chest, 136(1): 110–117.CrossRefGoogle ScholarPubMed

Adams, ZM, Fins, JJ (2017) The historical origins of the vegetative state: Received wisdom and the utility of the text. Journal of the History of the Neurosciences, 26(2): 140–153.CrossRefGoogle ScholarPubMed

Classen, J, Doyle, K, Matory, A, et al. (2019). Detection of brain activation in unresponsive patients with acute brain injury. New England Journal of Medicine, 380(26): 2497–2505.Google Scholar

Edlow, BL, Fins, JJ (2018). Assessment of covert consciousness in the intensive care unit: Clinical and ethical considerations. Journal of Head Trauma and Rehabilitation, 33(6): 424–434.CrossRefGoogle ScholarPubMed

Fins, JJ (2015). Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness. New York: Cambridge University Press.CrossRefGoogle Scholar

Fins, JJ (2019a). Disorders of consciousness in clinical practice: Ethical, legal and policy considerations. In Posner, JP, Saper, CB, Claussen, J, Schiff, ND, eds., Plum and Posner’s Diagnosis of Stupor and Coma, 5th ed. New York: Oxford University Press, 449–477.Google Scholar

Fins, JJ (2019b). Disorders of consciousness, Past, present, and future. Cambridge Quarterly of Healthcare Ethics, 28(4): 603–615.Google Scholar

Fins, JJ (2019c). When no one notices: Disorders of consciousness and the chronic vegetative state. The Hastings Center Report, 49(4): 14–17.CrossRefGoogle ScholarPubMed

Fins, JJ (2020). Cruzan and the other evidentiary standard: A reconsideration of a landmark case given advances in the classification of disorders of consciousness and the evolution of disability law. Southern Methodist University Law Review, 73(1): 91–118.Google Scholar

Fins, JJ, Bernat, JL (2018). Ethical, palliative, and policy considerations in disorders of consciousness. Neurology, 91(10): 471–475.CrossRefGoogle ScholarPubMed

Fins, JJ, Pohl, BR (2015). Neuro-palliative care and disorders of consciousness. In Hanks, G, Cherny, NI, Christakis, NA, Fallon, M, Kassa, S, Portenoy, RK, eds., Oxford Textbook of Palliative Medicine, 5th ed. Oxford University Press, 285–291.CrossRefGoogle Scholar

Giacino, JT, Ashwal, S, Childs, N, et al. (2002). The minimally conscious state: Definition and diagnostic criteria. Neurology, 58(3): 349–353.CrossRefGoogle ScholarPubMed

Giacino, JT, Fins, JJ, Laureys, S, Schiff, ND (2014). Disorders of consciousness after acquired brain injury: The state of the science. Nature Reviews Neurology, 10(2): 99–114.Google Scholar

Giacino, JT, Katz, DI, Schiff, ND, et al. (2018). Practice guideline: Disorders of consciousness. Neurology, 91(10): 450–460.CrossRefGoogle ScholarPubMed

Jennett, B, Plum, F (1972). Persistent vegetative state after brain damage: A syndrome in search of a name. Lancet, 1(7753): 734–737.CrossRefGoogle ScholarPubMed

Multi-Society Task Force on PVS. (1994). Medical aspects of the persistent vegetative state (Parts 1 and 2). New England Journal of Medicine, 330(21): 1499–1508 and 330(22): 1572–1579.CrossRefGoogle Scholar

Schiff, ND (2015). Cognitive motor dissociation following severe brain injury. JAMA Neurology, 72(12): 1413–1415.Google Scholar

Schiff, ND, Fins, JJ (2016). Brain death and disorders of consciousness. Current Biology, 26(13): R572–R576.CrossRefGoogle ScholarPubMed

American College of Obstetricians and Gynecologists Committee on Ethics. (2007; reaffirmed 2019). ACOG Committee Opinion #385: The limits of conscientious refusal in reproductive medicine. Obstetrics and Gynecology, 110(5): 1203–1208.CrossRefGoogle Scholar

American College of Obstetricians and Gynecologists Committee on Ethics. (2016, reaffirmed 2019). ACOG Committee Opinion #664: Refusal of medically recommended treatment during pregnancy. Obstetrics and Gynecology, 127(6): 1189–1190.Google Scholar

Faden, RR, Kass, N, McGraw, D (1996). Women as vessels and vectors: Lessons from the HIV epidemic. In Wolf, SM, ed., Feminism and Bioethics: Beyond Reproduction. New York: Oxford University Press, 252–281.CrossRefGoogle Scholar

Layne, L (2003). Motherhood Lost: A Feminist Account of Pregnancy Loss in America. New York: Routledge.Google Scholar

Little, MO (2008). Abortion and the margins of personhood. Rutgers Law Journal, 39: 331–348.Google Scholar

Little, MO, Lyerly, AD, Mitchell, LM, et al. (2008). Mode of delivery: Toward responsible inclusion of patient preferences. Obstetrics and Gynecology, 112(4): 913–918.CrossRefGoogle ScholarPubMed

Lyerly, AD, Gates, E, Cefalo, RC, Sugarman, J (2001). Toward the ethical evaluation and use of maternal-fetal surgery. Obstetrics and Gynecology, 98(4): 689–697.Google ScholarPubMed

Mahowald, MB (1995). As if there were fetuses without women: A remedial essay. In Callahan, J, ed., Reproduction, Ethics and the Law: Feminist Perspectives. Bloomington: Indiana University Press, 199–218.Google Scholar

Batton, DG, DeWitte, DB, Pryce, CJ (2011). One hundred consecutive infants born at 23 weeks and resuscitated. American Journal of Perinatology, 28(4): 299–304.Google Scholar

Donohue, P, Boss, R, Aucott, S, Keene, E, Teague, P (2010). The impact of neonatologists’ religiosity and spirituality on health care delivery for high-risk neonates. Journal of Palliative Medicine, 13(10): 1219–1224.CrossRefGoogle ScholarPubMed

Hsiao, CC, Tsao, LY, Chen, HN, Chiu, HY, Chang, WC (2009). Changing clinical presentations and survival pattern in trisomy 18. Pediatrics and Neonatology, 50(4): 147–151.Google Scholar

Janvier, A, Okah, F, Farlow, B, Lantos, JD (2011). An infant with trisomy 18 and a ventricular septal defect. Pediatrics, 127(4): 754–759.Google Scholar

Kaempf, JW, Tomlinson, MW, Campbell, B, Ferguson, L, Stewart, VT (2009). Counseling pregnant women who may deliver extremely premature infants: Medical care guidelines, family choices, and neonatal outcomes. Pediatrics, 123(6): 1509–1515.Google Scholar

McDougall, R, Gillam, L, Spriggs, M, Delany, C (2018). The zone of parental discretion and the complexity of paediatrics: A response to Alderson. Clinical Ethics, 13(4): 172–174.Google Scholar

McGraw, MP, Perlman, JM (2008). Attitudes of neonatologists toward delivery room management of confirmed trisomy 18: Potential factors influencing a changing dynamic. Pediatrics, 121(6): 1106–1110.Google Scholar

Norman, M, Hallberg, B, Abrahamsson, T, et al. (2019). Association between year of birth and 1-year survival among extremely preterm infants in Sweden during 2004–2007 and 2014–2016. JAMA, 321(12): 1188–1199.CrossRefGoogle ScholarPubMed

Rosa, RF, Rosa, RC, Lorenzen, MB, et al. (2011). Trisomy 18: Experience of a reference hospital from the south of Brazil. American Journal of Medical Genetics A, 155A(7): 1529–1535.CrossRefGoogle ScholarPubMed

Rysavy, R, Li, L, Bell, EF, et al. (2015). Between-hospital variation in treatment and outcomes in extremely preterm infants. New England Journal of Medicine, 372(19): 1801–1811.Google Scholar

Tyson, JE, Parikh, NA, Langer, J (2008). Intensive care for extreme prematurity – moving beyond gestational age. New England Journal of Medicine, 358: 1672–1681.CrossRefGoogle ScholarPubMed

Beauchamp, TL, Childress, JF (2012). Principles of Biomedical Ethics, 7th ed. New York: Oxford University Press.Google Scholar

Buchanan, A, Brock, D (1990). Deciding for Others: The Ethics of Surrogate Decision Making. New York: Oxford University Press.Google Scholar

Diekema, DS (2004). Parental refusals of medical treatments: The harm principle as threshold for state intervention. Theoretical Medicine and Bioethics, 25(4): 243–264.Google Scholar

Diekema, DS (2020). Adolescent brain development and medical decision-making. Pediatrics, 146(2, Suppl. 1): S18–S24.CrossRefGoogle ScholarPubMed

Feinberg, J (1984). Harm to Others: The Moral Limits of the Criminal Law. New York: Oxford University Press.Google Scholar

Katz, AL, Webb, SA, The American Academy of Pediatrics Committee on Bioethics. (2016). Technical report: Informed consent in decision-making in pediatric practice. Pediatrics, 138(2): e20161485.Google Scholar

Menikoff, J (2002). Law & Bioethics: An Introduction. Washington, DC: Georgetown University Press.Google Scholar

Nelson, HL, Nelson, JL (1995). The Patient in the Family. New York: Routledge.Google Scholar

Ross, LF (1998). Children, Families, and Health Care Decision Making. New York: Oxford University Press.CrossRefGoogle Scholar

Ross, LF (2019). Better than best (interest standard) in pediatric decision making. Journal of Clinical Ethics, 30(3): 183–195.Google Scholar

Ross, LF, Blustein, J, Clayton, EW (2009). Adolescent decision making. Cambridge Quarterly of Healthcare Ethics, 18(3): 302–322, 18(4): 432–442.Google Scholar

Salter, E (2012). Deciding for a child: A comprehensive analysis of the best interest standard. Theoretical Medicine and Bioethics, 33(3): 179–198.CrossRefGoogle Scholar

Connectome Programs | Blueprint (NIH). (n.d.) https://neuroscienceblueprint.nih.gov/human-connectome/connectome-programs (accessed November 23, 2020).Google Scholar

Illes, J, Bird, SJ (2006). Neuroethics: A modern context for ethics in neuroscience. Trends in Neurosciences, 29(9): 511–517.CrossRefGoogle ScholarPubMed

Jacobs, BS, Poggesi, A, Terry, JB (2017). Max-ICH score: Can it prevent self-fulfilling prophecy in ICH? Neurology, 89(5): 417–418.CrossRefGoogle ScholarPubMed

Robison, JE (2016, March 18). An experimental autism treatment cost me my marriage. https://well.blogs.nytimes.com/2016/03/18/an-experimental-autism-treatment-cost-me-my-marriage/Google Scholar

Singh, I (2006). Will the “real boy” please behave: Dosing dilemmas for parents of boys with ADHD. American Journal of Bioethics and Humanities, 5(3): 34–47.CrossRefGoogle Scholar

Tovino, SA (2007). Functional neuroimaging information: A case for neuro exceptionalism? Scholarly Works, 76. https://scholars.law.unlv.edu/facpub/76Google Scholar

AAP Committee on Bioethics, Committee on Genetics, and the ACMG Social, Ethical and Legal Issues Committee. (2013). Ethical and policy issues in genetic testing and screening of children. Pediatrics, 131(3): 620–622.CrossRefGoogle Scholar

Centers for Disease Control and Prevention. (n.d.). Hereditary breast and ovarian cancer: BRCA 1 and BRCA 2. www.cdc.gov/genomics/disease/breast_ovarian_cancer/genes_hboc.htm (accessed September 1, 2020).Google Scholar

Kalia, SS, Adelman, K, Bale, SJ, et al. (2017). Recommendations for reporting of secondary findings in clinical exome and genome sequencing, 2016 update (ACMG SF v2.0): A policy statement of the American College of Medical Genetics and Genomics. Genetics in Medicine, 19(2): 249–255.CrossRefGoogle ScholarPubMed

May, T (2009). Bioethics in a Liberal Society. Baltimore: Johns Hopkins University Press.Google Scholar

May, T (2012). Re-thinking clinical risk for DNA sequencing. American Journal of Bioethics, 12(10): 24–26.CrossRefGoogle Scholar

May, T (2015). On the justifiability of ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Journal of Law, Medicine and Ethics, 43(1): 134–142.CrossRefGoogle ScholarPubMed

May, T, Fullerton, SM (2021). Ethical considerations in the use of direct-to-consumer genetic testing for adopted persons. Adoption Quarterly, 24(1): 89–100.CrossRefGoogle Scholar

May, T, Spellecy, R (2006). Autonomy, full information, and genetic ignorance in reproductive medicine. Monist, 6(1): 466–481.CrossRefGoogle Scholar

Raz, J (1990). Practical Reason and Norms. Princeton University Press.Google Scholar

Richards, S, Aziz, N, Bale, S, et al. (2015). Standards and guidelines for the interpretation of sequence variants: A joint consensus recommendation of the American College of Medical Genetics and Genomics and the Association for Molecular Pathology. Genetics in Medicine, 17(5): 405–424.CrossRefGoogle ScholarPubMed

Ross, LF, Saal, HM, Davis, KL, et al. (2013). Technical report: Ethical and policy issues in genetic testing and screening of children. Genetics in Medicine, 15(3): 234–245.CrossRefGoogle ScholarPubMed

Roberts, JS, Robinson, JO, Diamond, PM, et al. (2018). Patient understanding of, satisfaction with, and perceived utility of whole-genome sequencing: Findings from the MedSeq Project. Genetics in Medicine, 20(9): 1069–1076.CrossRefGoogle ScholarPubMed

Tandy-Connor, S, Guiltinan, J, Krempeley, K, et al. (2018). False-positive results released by direct-to-consumer genetic tests highlight the importance of clinical confirmation testing for appropriate patient care. Genetics in Medicine, 20(12): 1515–1521.Google Scholar

Welch, HG, Burke, W (2015, April 27). Op-ed: Why whole-genome testing hurts more than it helps. Los Angeles Times. www.latimes.com/opinion/op-ed/la-oe-welch-problems-predictive-medicine-20150428-story.htmlGoogle Scholar

Wolf, SM, Annas, GJ, Elias, S (2013). Respecting patient autonomy in clinical genomics: New recommendations on incidental findings go astray. Science, 340(6136): 1049–1050.CrossRefGoogle Scholar

ACS NSQIP Surgical Risk Calculator. (2020). https://riskcalculator.facs.org/RiskCalculator/PatientInfo.jsp (accessed March 2020).Google Scholar

Bernard, HR, Hartman, TW. (1993). Complications after laparoscopic cholecystectomy. American Journal of Surgery, 165(4): 533–535.CrossRefGoogle ScholarPubMed

Bosk, C. (1979). Forgive and Remember. University of Chicago Press.Google Scholar

Cooper, Z, Mitchell, SL, Gorges, RJ, Rosenthal, RA, Lipsitz, SR, Kelley, AS (2015). Predictors of mortality up to 1 year after emergency major abdominal surgery in older adults. Journal of the American Geriatrics Society, 63(12): 2572–2579.CrossRefGoogle ScholarPubMed

Karpowicz, L, Bell, E, Racine, E (2016). Ethics oversight mechanisms for surgical innovation: A systematic and comparative review of arguments. Journal of Empirical Research on Human Research Ethics, 11(2): 135–164.CrossRefGoogle ScholarPubMed

Kruser, JM, Taylor, LJ, Campbell, TC, et al. (2017). “Best case/worst case”: Training surgeons to use a novel communication tool for high-risk acute surgical problems. Journal of Pain and Symptom Management, 53(4): 711–719 e715.CrossRefGoogle ScholarPubMed

Langerman, A, Siegler, M, Angelos, P (2016). Intraoperative decision making: The decision to perform additional, unplanned procedures on anesthetized patients. Journal of the American College of Surgeons, 222(5): 956–960.Google Scholar

Ramirez, PT, Frumovitz, M, Pareja, R, et al. (2018). Minimally invasive versus abdominal radical hysterectomy for cervical cancer. New England Journal of Medicine, 379(20): 1895–1904.Google Scholar

Reijers, W, Wright, D, Brey, P, et al. (2018). Methods for practising ethics in research and innovation: A literature review, critical analysis and recommendations. Science and Engineering Ethics, 24(5): 1437–1481.CrossRefGoogle ScholarPubMed

Taylor, LJ, Nabozny, MJ, Steffens, NM, et al. (2017). A framework to improve surgeon communication in high-stakes surgical decisions: Best case/worst case. JAMA Surgery, 152(6): 531–538.CrossRefGoogle ScholarPubMed

US Food & Drug Administration. (2019). Caution when using robotically-asssisted surgical devices in women’s health including mastectomy and other cancer-related surgeries: FDA safety communication. www.fda.gov/medical-devices/safety-communications/caution-when-using-robotically-assisted-surgical-devices-womens-health-including-mastectomy-and (accessed March 15, 2020).Google Scholar

Appelbaum, P, Gutheil, T (1992). Clinical Handbook of Psychiatry and the Law, 2nd ed. Baltimore: Williams & Wilkins.Google Scholar

Buchman, DZ, Lynch, MJ. (2018). An ethical bone to PICC: Considering a harm reduction approach for a second valve replacement for a person who uses drugs. American Journal of Bioethics, 18(1): 79–81.CrossRefGoogle ScholarPubMed

Committee on the Science of Changing Behavioral Health Social Norms; Board on Behavioral, Cognitive, and Sensory Sciences; Division of Behavioral and Social Sciences and Education; National Academies of Science, Engineering, and Medicine. (2016). Ending Discrimination against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: National Academies Press.Google Scholar

Gabbard, G, Roberts, LW, Crisp-Han, H, Ball, V, Hobday, G, Rachal, F (2012). Professionalism in Psychiatry. Washington, DC: American Psychiatric Press.Google Scholar

Geppert, C, Cohen, M, Bourgeois, J, Peterson, M (2016). Bioethical challenges for psychiatrists: Determination of decisional capacity. Psychiatric Times, 33(7).Google Scholar

Livingston, R, Wu, C, Mu, K, Coffey, MJ (2018). Regulation of electroconvulsive therapy: A systematic review of US state laws. Journal of ECT, 34(1): 60–68.Google Scholar

Owens, PL, Fingar, KR, McDermott, KW, Muhuri, PK, Heslin, KC (2019). Inpatient stays involving mental and substance use disorders, 2016: Statistical brief #249. In Health Care Cost and Utilization Project. Rockville, MD: Agency for Healthcare Research and Quality.Google Scholar

Radden, J, Sadler, J (2010). The Virtuous Psychiatrist: Character Ethics in Psychiatric Practice. New York: Oxford University Press.Google Scholar

Swanson, JW, McCrary, SV, Swartz, MS, Elbogen, EB, Van Dorn, RA (2006). Superseding psychiatric advance directives: Ethical and legal considerations. Journal of the American Academy of Psychiatry and Law, 34(3): 385–394.Google Scholar

Testa, M, West, SG (2010). Civil commitment in the United States. Psychiatry (Edgmont), 7(10): 30–40.Google Scholar

Treloar, A, Crugel, M, Prasanna, A, et al. (2010). Ethical dilemmas: Should antipsychotics ever be prescribed for people with dementia? British Journal of Psychiatry, 197(2): 88–90.Google Scholar