Вы находитесь на странице: 1из 18

Privacy in a Digital Age

Final Paper

The Privacy Rights of Minors in the US Health System

The World Health Organization defines a health system as all organizations, people and
actions whose primary intent is to promote, restore or maintain health.1 It is a complex web of
physicians, clinics, lay caregivers, health departments, insurance companies, and many more. We
constantly interact with health systems, using them throughout our lifespan. The inclusion of
minors within this system calls for special considerations to balance the rights of parents to care
for and make decisions for minors in their care with the rights to privacy of minors.
The idea of privacy in health care dates back to Hippocrates in the 5th century BC and the
oath named for him in the 4th century BC.2 Ancient physicians pledged What I may see or hear
in the course of the treatment or even outside of the treatment in regard to the life of men, which
on no account one must spread abroad, I will keep to myself, holding such things shameful to be

1 Everybodys Business: Strengthening Health Systems to Improve Health Outcomes, World Health
Organization, 2007. This is the World Health Organizations document on their plan to strengthen health
system. The 2007 publication includes an analysis of health systems, responses to the challenges
identified by WHO, and the implications of those responses.
2 Tyson, P., The Hippocratic Oath Today PBS, 2001. This article is part of the NOVA education
program of PBS that discusses both the history and the modern interpretation of the Hippocratic Oath.
The article also discusses the current controversies and applicability to modern medicine. Retrieved from

spoken about.3 The oath has evolved through the ages, both in content and acceptance.
Currently almost 100% of medical schools include some form of Hippocratic Oath, which has
swelled over the course of this century from 24% administering the oath in 1928. Physicians now
pledge, I will respect the privacy of my patients, for their problems are not disclosed to me for
the world to know, alongside with their legal and ethical obligations.4
There are two forms of privacy that are of special importance in the medical context:
informational and decisional. Informational privacy would include the protection of information
on past and present medical conditions (physical and mental), treatment plans, and demographic
and other identifying information. This is exemplified by the ability of minors to seek treatment
for STDs and substance abuse problems without their parents being able to access those records.
Decisional privacy, on the other hand, protects individuals from governmental or parental (in the
case of minors) interference in medical decisions. Decisional privacy of minors in health care is
best demonstrated by the right to privacy in making decisions about reproductive health without
parental input or notification.

Health care Privacy Law and Practice

In the United States, HIPAA (Health Insurance Portability and Accountability Act5),
specifically the Privacy Rule (Standards for Privacy of Individually Identifiable Health
3 Id. Translation from Greek by Ludwig Edelstein, Johns Hopkins. From The Hippocratic Oath: Text,
Translation, and Interpretation, 1943.
4 Tyson, P., The Hippocratic Oath Today PBS, 2001. Oath modernized by Louis Lasagna, Tufts
University, in 1964. This version is used in many medical schools today. Retrieved from
5 Public Law 104-191, passed in 1996.

Information6), is the governing law on health care information privacy. HIPAA gives broad
protection to health information and is applicable to individuals, groups, and businesses
(covered entities)7 who work with personal health information (PHI), specifically under the
Privacy Rule. These covered entities are allowed to disclose PHI only for the purposes of
treatment, payment for health services, and for group functions, such as quality control. The Act
does require that such disclosures include only the minimum amount of PHI possible.
Additionally, covered entities are required to disclose PHI as required by law, such as for
subpoenas and court orders, as well as information that is required to be disclosed by mandatory
reporters.8 Health information can also be disclosed if it presents a threat to public safety, which
is exemplified by STD reporting to local health departments as well as the CDC. All other
disclosures require specified, written consent. Additional rights given by the Privacy Rule
include giving patients access to their PHI, the ability to correct errors in their PHI, and the
ability to see who has accessed their information.9

6 65 FR 8262 was the original version of the Privacy Rule, and was passed in December 2000. 67 FR
53182 was passed in 2002 as an updated Privacy Rule, taking public comments into account, and is the
current version of the Privacy Rule.
7 Summary of the HIPAA Privacy Rule, U.S. Department of Health and Human Services. Business
associates are also covered by the Privacy Rule. Business associates are individuals or organizations that
also work with PHI on the behalf of a covered entity. Examples include law firms, accountants,
administrative staff, and management staff. For more detailed definitions of covered entities and business
associates, see http://www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html.
8 Childrens Bureau, 2015. A mandatory reporter refers to someone who is legally required to disclose
information on a certain illegal subjects, notably child abuse or neglect, but also including in some
circumstances elder abuse, domestic violence, and intent to commit a violent crime. Retrieved from
9 Summary of the HIPAA Privacy Rule, U.S. Department of Health and Human Services. Retrieved
from http://www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html.

Under HIPAAs Privacy Rule parents are considered the personal representatives of
their children under 18. As a result, health care information of minors is almost always shared
with parents or guardians. Another reason for this disclosure of medical information is that
minors legally cannot provide the consent needed for medical procedures in many contexts. This
causes a lack of both informational and decisional privacy for minors. HIPAA does protect a
minors privacy when a minor is the one consenting to the care, the treatment or medical care is
court ordered, or the parents have agreed to allow the minor privacy.10 The question or what care
a minor can consent to, with or without parental involvement, is left to individual states.11
A second source of legislation on the privacy of minors is FERPA (Family Educational
Rights and Privacy Act).12 FERPA protects student education records, which includes the records
generated by school nurses, psychologists, and other health care workers either directly
employed by or contracted to by a school receiving funds from the Department of Education.
Health information protected under FERPA includes immunization records, health clinic records,
school psychologist records, and medical information of students with special needs. Education
records may be disclosed to parents if the student is under 18, with most other disclosures
10 Does the HIPAA Privacy Rule allow parents the right to see their childrens medical records?, U.S.
Department of Health and Human Services, 2002. Retrieved from http://www.hhs.gov/hipaa/forprofessionals/faq/227/can-i-access-medical-record-if-i-have-power-of-attorney/index.html.
11 Weddle, M. and Kokotailo, P. K. Confidentiality and Consent in Adolescent Substance Abuse: An
Update. Virtual Mentor, March 2005, vol 7(3). Retrieved from: http://journalofethics.amaassn.org/2005/03/pfor1-0503.html.
12 Joint Guidance on the Application of the Family Educational Rights and Privacy Act (FERPA) and
the Health Insurance Portability and Accountability Act of 1996 (HIPAA) to Student Health Records,
U.S. Department of Education and U.S. Department of Health and Human Services, 2008. FERPA (20
U.S.C. 1232g; 34 CFR Part 99) was passed in 1974 to protect student records, including records
generated by school health staff, such as school nurses and psychologists. For further discussion on
FERPA as it applies to health care and its intersection with HIPAA, see

requiring written consent of either the parents of the minor student or the adult student.
Exceptions include disclosure to school officials who have legitimate educational interest, to
other schools that the student plans to enroll, and the inclusion of information in directories.13
It has been recognized by various professional organizations in medicine that adolescents
need confidentiality in order to be treated effectively for all conditions.14 Multiple studies have
shown the importance of confidentiality in health care for teens. For example, a 2002 study
found that 60% of teen girls would stop using some or all services for sexual health if parental
notification was required.15 A 2010 study found that 66% of abortion-seeking 14-15 year olds and
75% of abortion-seeking 16-17 year olds felt negatively towards mandatory parental notification
laws regarding abortion.16 Since all of these health concerns have serious, potentially life-long
and life-threatening impacts on an adolescent, the protection of health information to encourage
adolescents to seek treatment is necessary to their well-being.
13 FERPA General Guidance for Parents, U.S. Department of Education, 2015. Other exceptions
include disclosures that are legally required, for certain research purposes, and for financial aid. For more
detailed information on disclosure of educational records, including health-related records, see
14 Loxterman, J., Adolescent Access to Confidential Health Service, Advocates for Youth, 1997. The
American Medical Association, the American Academy of Pediatrics, American College of Physicians,
and the American Public Health Association have all recognized the need to maintain the confidentiality
of minors in certain health care systems. Retrieved from
15 Lehrer, J. A., Pantell, R., Tebb, K., Shafer, M., Forgone Health Care among U.S. Adolescents:
Associations between Risk Characteristics and Confidentiality Concern, Journal of Adolescent Health,
March 2007, vol. 40, pp. 219. This study was carried out among adolescent girls using family planning
clinics confidentially. Retrieved from http://www.jahonline.org/article/S1054-139X(06)00375-2/pdf.
16 Kavanagh, E. K., Hasselbacher, L. A., Betham, B., Tristan, S., Gilliam, M. L. Abortion-Seeking
Minors Views on the Illinois Parental Notification Law: A Qualitative Study Perspectives on Sexual and
Reproductive Health, 2012, pp. 161. Minors having abortions in three Chicago locations were asked about
their opinions on various topics related to the Illinois Parental Notification Law and minors access to
abortion. Retrieved from http://onlinelibrary.wiley.com/doi/10.1363/4415912/epdf.

Contexts for the Privacy of Minors in Health care

Overall, the privacy rights of minors within the health care system are left to the individual states
because of the Privacy Rules deference. While all states have some form of legislation on the
privacy rights of minors, none of these statutes provide umbrella protection.17 Instead, privacy is
provided contextually, as it is in most other areas of law, with many of the statutes affording
privacy to minors including provisions for parental notification, either legally mandated or at the
discretion of the physician. So, in order to understand the privacy rights of minors within health
care, their privacy rights must be examined within a given situation.
Reproductive Control Contraception and Abortion
Possibly one of the best known examples of the turmoil surrounding minors health care
privacy rights is reproductive control: contraceptives and abortion.18 Both of these types of
reproductive control hold their own nuanced set of privacy debates, with both including
decisional and informational privacy rights.
Oral contraceptives were approved by the FDA in 1960, after a long history of attempts at
adequate birth control. However, contraceptives were initially outlawed in many states, until
Griswold v. Connecticut, 381 U.S. 479 (1965), struck down laws prohibiting contraception on the

17 McGuire, A. L., Bruce, C. R., Keeping Childrens Secrets: Confidentiality in the Physician-Patient
Relationship, Houston Journal of Health Law and Policy, 2008, pp. 322. Privacy is largely contextual
and, as a result, confidentiality in health care is given to adolescents in only some contexts. Retrieved
from https://www.law.uh.edu/hjhlp/volumes/Vol_8_2/McGuire.pdf.
18 It is important to note that reproductive control over the use of oral contraceptives and abortion
services is not limited to traditionally female adolescents, but also to trans and non-binary teens.

grounds that it violated the privacy rights of married couples.19 Laws prohibiting use of birth
control by unmarried people werent struck down until 1972 (Eisennstadt v. Baird, 405 U.S. 438)
and laws prohibiting the use of birth control by minors under 16 werent struck down until 1977
(Carey v. Population Services International, 431 U.S. 687), both on the grounds of privacy
violation. Under the 1978 amendment of Title X, any recipient of funding from Title X is legally
required to provide confidential contraceptive care and family planning services to minors,
although the act was further amended in 1981 to require these same groups to encourage
adolescents to involve their parents.20 While the Reagan administration interpreted this as
requiring providers to notify parents within 10 days, this requirement was struck down in 1983
by the Federal Court case Planned Parenthood v. Matheson, Utah 582 F. Supp. 1001. Currently,
no state laws bar minors access to contraceptives and family planning services.
The permissible extent of abortion rights is a significant debate in decisional privacy for
both adults and minors. It exemplifies health care decisional privacy as the government attempts
to regulate private medical decisions. In 1973, Roe v Wade, 410 U.S. 113 (1973), struck down a
Texas law banning abortion, and took with it dozens of other such laws.21 That same year,
additional restrictions laid down by Georgia law were struck down in Doe v. Bolton, 410 U.S.
19 Major U.S. Supreme Court Rulings on Reproductive Health and Rights, Planned Parenthood, 2007.
This document includes overviews of major U.S. Supreme Court cases involving reproductive health care
and rights. Retrieved from https://www.plannedparenthood.org/files/6113/9611/6576/major_scrulings_0407.pdf.
20 Planned Parenthood Association of Utah v. Matheson, 582 F. Supp 1001.
21 Major U.S. Supreme Court Rulings on Reproductive Health and Rights, Planned Parenthood, 2007.
The Supreme Court recognized a persons right to choose to have an abortion as being a private choice
that the State could not interfere with, at least through the first trimester (12 weeks). It does allow the
State to begin to impose regulations after that, specifically once the fetus reaches viability (the ability to
survive outside of the womb), when the State has an interest in the potential life of the fetus. However,
abortion must always be legal to save a persons life. Retrieved from

179 (1973), a lesser known but extremely influential Supreme Court case.22 The first Supreme
Court case to specifically involve the rights of minors was Planned Parenthood of Central
Missouri v. Danforth, 428 U.S. 52 (1976). The decision struck down the absolute veto power of
parents in the case of an unemancipated minor seeking an abortion. Further Supreme Court cases
involving minors and the right to privately seek an abortion include Bellotti v. Baird, 443 U.S.
622 (1979), which gave all minors the right to approach a judge for judicial bypass without
notifying her parents and that permission be given to mature minors to have an abortion even if a
judge believes the abortion is not in her best interest, H.L. v. Matheson, 450 U.S. 398 (1981),
which upheld a Utah law that parents must be notified prior to an unemancipated minors
abortion provided the minor doesnt show that they are a mature minor or that the notification is
inappropriate given her relationship with her parents, and Ayotte v. Planned Parenthood of
Northern New England, 546 U.S. 320 (2002), which struck down the requirement that parents be
notified prior to a minors abortion.23
The process of judicial bypass was recognized by the U.S. Supreme Court in Bellotti v.
Baird, 443 U.S. 622 (1979). Judicial bypass is the ability of a minor to bypass the parental
permission requirement in states that have this requirement. With judicial bypass, a minor files a
petition with the juvenile court to be declared mature enough to make the decision to have an
abortion. A judge can also decide to grant the minor the ability to have an abortion even if they
22 Id. The restrictions shut down were the requirement that abortions take place in an accredited hospital,
that a committee including two doctors approve of the decision to have an abortion, and that only
residents of the state could seek an abortion. Retrieved from
23 Major U.S. Supreme Court Rulings on Reproductive Health and Rights, Planned Parenthood, 2007.
The overall requirement for a minors parents or legal guardian to be notified was not struck down, as the
parents must still be notified of the abortion in certain states, but the notification can take place
afterwards. Retrieved from

are not deemed mature if the judge feels an abortion is in the their best interest, but the judge
cannot deny them access to an abortion if the minor is found to be mature. The necessity of
judicial bypass in cases when a minor does not wish to involve their parents in her decision
varies by state, with 4 states not requiring parental notification or consent, 12 requiring parental
notification only, 21 states requiring parental consent, and 5 requiring both.24
While requirements for parental consent and notification are supposed to provide
protection to the minor, it restricts their access to timely abortion. Teens are already much more
likely than older people to seek an abortion later in their pregnancy, which leads to a higher rate
of complications, as well as higher cost, further hindering a minors access to health care. The
requirement for parental consent and or notification has been shown to further delay seeking an
abortion, either because the minor is afraid of the repercussions of telling their parents or because
of the time spent attaining judicial bypass. This was shown in a 1995 study that found that after
Missouri enacted a law requiring parental consent, the amount of second-trimester abortions (as
opposed to first-trimester abortions) increased by 17%.25
The case of abortion rights extends into informational privacy as well. Some states go
beyond the requirement of parental permission for a minor to get an abortion to include the

24 Parental Involvement in Minors Abortions, Guttemacher Institute, 2016. Produced as part of the
series of State Policies in Brief". California, Nevada, New Jersey, and New Mexicos laws prohibiting
abortion without parental notification or consent are all permanently enjoined and therefore no longer in
effect. Montanas law is temporarily enjoined. Of the 5 states requiring both consent and notification,
Utah has the most restrictive laws on minors privacy, having the allowing bypass of consent only in cases
of abuse, assault, incest, or neglect. Even when parental consent is bypassed, a physician still must notify
the parents. Retrieved from https://www.guttmacher.org/sites/default/files/pdfs/spibs/spib_PIMA.pdf.
25 Laws Restricting Teenagers Access to Abortion, American Civil Liberties Union, 2016. From data
gathered in Missouris Parental Consent Law and Teen Pregnancy Outcomes, 22 Women and Health 47,
53 by Vicky Howell Pierson, 1995. For further discussion see https://www.aclu.org/laws-restrictingteenagers-access-abortion.

requirement of notification of the parents even though they are not required to consent.26 By
requiring the disclosure of a minors abortion, their personally identifiable health information is
being disclosed by a health care provider. Following HIPAAs Privacy Rule, such information is
not allowed to be disclosed without express written consent under most circumstances. To give
minors both decisional and informational privacy, parental consent and notification requirements
should be removed, both for contraception and abortion. The majority of minors who seek
abortions do so with the knowledge of a parent and teens who dont have strong reasons, such as
fear of violence or being kicked out of their home.27 By removing the requirement of notification
and consent, the need for judicial bypass would also be removed, therefore decreasing the time
that it would take a minor to receive an abortion. In addition to giving teens privacy in their
reproductive health care decisions, this reduces medical concerns and complication rates as well
as reducing the stress on teens seeking an abortion. This legislation should take place at the
federal level, which would give uniform protection to adolescents, as well as removing the
variance between states.

Sexually Transmitted Infections (STIs)

All 50 states give minors the right to consent to testing and treatment of STIs, although
some states restrict this based on the age of the minor.28 Only 31 states give minors the right to
26 Id. 17 states require parental notification, including Utah.
27 Id. 61% of teens discussed their abortion decision with a parent. The number increases to 90% for
minors under 15. Fear of being kicked out of their home accounted for 22% of teens who did not involve
their parents and over 8% feared physical violence. From the 1992 study Parental Involvement In
Minors Abortion Decisions.
28 Minors Access to STI Services, Guttmacher Institute, 2016. For a details on laws by state, see

confidential HIV testing, 26 of which also allow confidential HIV treatment. Some states allow
physicians to contact parents about STI-related services, giving them the option to legally violate
the minors privacy, and Iowa requires parental notification for a positive HIV test. This covers
parental notification and involvement in an adolescents reproductive health, however there is a
second entity involved in the privacy of adolescents STI treatment: the government.
STIs can pose a threat to public health, making them of legitimate concern to the State.
Many STIs are reported to local and state health departments, as well as the CDC.29 At the local
level, some identifiable information is given to authorities so that sexual partners can be notified,
although the person is given the option of notifying partners themselves. While public health
authorities dont give the name of the partner diagnosed with an STI, for many, this is still
enough to identify who has the STI. In this case, some privacy rights of the individual are lost in
favor of public safety. After the local level, only numbers are sent to the CDC for statistics
compilation, which preserves the privacy of patients. This reporting process is the same for
adults and minors.
Given its importance to both personal and public health, confidential STI testing and
treatment should continue to be guaranteed to minors, but with additional protections at the
federal level and the additional guarantee of access to HIV services. This removes any
discrepancies between states, such as age of consent to such services. Said legislation should also
incorporate when social services should be notified. While a 16 year old receiving testing and
treatment might be having consensual sex, a 12 year old is far less likely to be giving consent to
sexual contact. Notifying social services if a minor under a certain age requested testing or
treatment could be included as part of the mandatory reporting of abuse of minors, and could
29 Vyas, J. M., Reportable Diseases, U.S. National Library of Medicine, 2015. STIs that are reported
include gonorrhea, chlamydia, and syphilis. For more information on reportable diseases, see

also make sure that the minor was giving informed consent, or that social services could step in
and give consent for the benefit of the minor. This would both protect the minor while giving
them access to confidential services without fear of their parents being notified.

Substance Abuse and Addiction

At the federal level, substance abuse treatments are subject to the general requirements of the
Privacy Rule, so the confidentiality of minors is regulated on a state by state basis. Nearly every
state has a law that allows minors to consent to confidential substance abuse and addiction
treatment, with the exceptions of Utah and Wyoming.30 In the remaining states, the exact laws
surrounding this consent vary, with some states allowing consent regardless of age, some having
a minimum age, and some states requiring notification under certain circumstances. This service
is instrumental in allowing adolescents to safely get help for a potentially life threatening
problem. As previously noted, less than 20% of adolescents would still seek treatment if parental
involvement was required to access substance abuse resources and treatment services.31 Because
of this low rate, confidential access to substance abuse and addiction services is crucial in
maintaining adolescent health. A law that guaranteed this right to private treatments would
ensure that teens retain access to these critical services.

Mental Health Care

30 Weisleder, P., Inconsistency Among American States on the Age at Which Minors Can Consent to
Substance Abuse Treatment, Journal of the American Academy of Psychiatry Law, 2007, pp. 318.
Retrieved from: http://www.jaapl.org/content/35/3/317.full.pdf.
31 Loxterman, J., Adolescent Access to Confidential Health Service, Advocates for Youth, 1997.

Access to mental health care is extremely important for adolescents due to the significant
development of the adolescent brain, as well as social and physical development.32 Additionally,
many mental illnesses first manifest during adolescence. Due to a variety of factors, lack of
confidentiality included, a significant proportion of adolescents choose to go without mental
health care.33 Only 20 states and the District of Columbia give minors the authority to seek
confidential outpatient health care, leaving many minors unable to access this vital service.
One consideration with mental health care privacy is that psychotherapy notes are
afforded special protection under HIPAA, which apply equally to adults and minors.34 Under this
protection, the patient must authorize a disclosure for any reason, including treatment by other
health care professionals, unlike the remainder of their medical record. Like the majority of a
minors medical record, parents are allowed to access this information as the personal
representative of the minors, with the same exceptions as the general HIPAA Privacy Rule.35
However, while the parents do have the right to release psychotherapy notes to other covered
entities for the purposes of treatment, they do not have the right to access their childs
32 Schwarz, W. W., Adolescent Mental Health in the United States, National Center for Children in
Poverty, June 2009. Retrieved from: http://www.nccp.org/publications/pub_878.html.
33 Id. 25-30% of adolescents choose not to seek mental health care, according to a 1997 study published
in the Journal of the American Medical Association. Additional reasons include lack of access, inadequate
health insurance, and unstable living conditions, such as poverty and homelessness.
34 HIPAA Privacy Rule and Sharing Information Related to Mental Health, U.S. Department of Health
and Human Services. Protected notes are the documentation and analysis of conversation with patients
during private or non-private counseling sessions and are kept separate from the rest of patients medical
record. Protected notes do not include medication records, information on diagnosis of treatment, or
progress in said treatments. For further information, see http://www.hhs.gov/hipaa/forprofessionals/special-topics/mental-health/.
35 Id. The exceptions are (1) where state law allows the minor to consent or does not require parental
consent, (2) when someone other than the parents is allowed to and does provide consent, and (3) when a
parent agrees to allow confidentiality. . For further information, see http://www.hhs.gov/hipaa/forprofessionals/special-topics/mental-health/.

psychotherapy note, just as adults cannot access their own therapy notes. In this sense, minors do
have an added layer of confidentiality. However, since their diagnosis, treatment, and progress
are available, there are still gaps in the privacy of their mental health.
Because of both the deeply personal nature of mental health problems as well as the
stigma associated with mental illnesses, minors should be given access to confidential mental
health care, guaranteed at the federal level. This would include both the privacy of
psychotherapy notes as already afforded by law and the privacy of diagnosis, treatment, and
progress notes. Some caveats would need to be added to this law. One is the point at which
parents can be notified. Managing mental health is difficult for adults and minors may not be
mature enough. However, since mental health management is both vitally important and difficult,
maturity determinations should be done by the mental health care provider. They will have more
insight into both mental health care and the maturity and capabilities of minors then a judge will
and the ability of the minor to receive treatment will not be delayed by the justice system. The
law would also need to delineate guidelines for parental involvement, such as when the minor
has reached a point in their mental illness that they can no longer provide informed consent, or
be reasonably expected for.

General Health Services

Because privacy is contextual, there is a large amount of ambiguity in what minors can and cant
consent to, as well as which minors can provide consent. Since consent is one of the tenants
which allows confidentiality from parents, examining consent gives a basis for where teens can
expect confidentiality. Areas in which teens may consent that have already been discussed are


contraception, abortion, STI treatment, substance abuse and addition, and mental health care.36
There are many other areas of medical care in which an adolescent may desire treatment but
disagree with their parents, especially in areas of controversy or in treatments dictated by
religious beliefs.
The ability of a minor to consent to treatment is generally granted in one of two ways: based on
the type of treatment, such as receiving contraception or STI treatment, or based on the status of
the minor, such as mature minors. The idea of mature minors is most often applied to abortion
rights, but can be applied to other areas of health care as well, allowing older minors who have
been found to be mature by either the courts or, in some cases, a health care provider to consent
to health care.
An area of recent controversy is vaccination. The anti-vaccination movement has led to
parents choosing not to vaccinate their children, either because of perceived dangers or for
personal objections. When children reach adolescence, however, they may adopt the majority
view that vaccination is useful and protective, and thus desire to be vaccinated. Some vaccines
are already included in laws giving minors consent to treatment because of their role in sexual
health.37 For other vaccines, the law does not give a clear ruling on the need for parental consent.
Under the National Childhood Vaccine Injury Act of 1986 (NCVIA) parental consent is not
specifically required. However, it is required that parents or guardians receive a vaccine

36 English, A., Shaw, F. E., McCauley, M. M., Fishbein, D. B., Legal Basis of Consent for Health Care
and Vaccination, Pediatrics, January 2008, vol. 121(1), pp. S85, table 2. Additional areas in which
adolescents can consent for medical services include prenatal and pregnancy care and examination and
treatment for sexual assault. For further discussion see
37 Id, pp. S87. Both the Hepatitis B and, in some states, HPV vaccines are covered as preventative care
for STIs that minors are authorized to consent for and receive confidentially.

information statement38. State laws, on the other hand, often do require consent, even if the law is
not specific to vaccination.
It is, as previously mentioned, possible to bypass the parental consent requirements by
declaring the minor seeking treatment a mature minor.39 Another way for teens and children to
receive treatment without consent is for the State to act in the minors best interest. One example
of this include the State requiring life-saving blood transfusions for the children of Jehovahs
Witnesses. In this case, parental access to medical records is not guaranteed under the Privacy
Rule because someone other than the parents is giving consent. A third alternative to the need for
parental consent is that the minor belongs to a group that is given the ability to consent. These
groups vary by state, but include emancipated minors, minors who are married or pregnant, and
minors who do not live with their parents.40
Legislating for umbrella confidentiality for minors is a difficult proposition due to the
balance between the rights of parents and minors. While privacy for adolescents is vital in their
access to health care, parents also have some rights to knowing what their child is experiencing.
Creating broader protections for certain types of treatments and certain groups of minors is a
good starting block, but it leaves many areas unprotected. Creating a federal law that provides
38 English, A., Shaw, F. E., McCauley, M. M., Fishbein, D. B., Legal Basis of Consent for Health Care
and Vaccination, Pediatrics, January 2008, vol. 121(1), pp. S86. NCVIA requires that parents or
guardians be provided with information prior to the administration of vaccines.
39 Maradiegue, A., Minors Rights Versus Parental Rights: Review of Legal Issues in Adolescent Health
Care, Journal of Midwifery and Womens Health, 2003.
40 English, A., Shaw, F. E., McCauley, M. M., Fishbein, D. B., Legal Basis of Consent for Health Care
and Vaccination, Pediatrics, January 2008, vol. 121(1), pp. S86, Table 1. Additional groups of minors
who are able to consent in some states are minors who are parents, minors serving in the armed forces,
incarcerated minors, minors of a certain age (such as in the contraception and mental health care laws),
and high school graduates. Retrieved from

guidelines on determining if a minor is mature, and giving those mature minors the ability to
consent to general and specialized medical treatments thus protecting their decisional privacy
and by extension informational privacy under the Privacy Rules exceptions to parental access to
medical records, would create uniform guidelines and protection for minors seeking confidential
health care. Additionally, as previously discussed in the section on mental health care, providers
should be making the determination of a minors maturity, rather than the justice system, due to
their relationship with the patient and their knowledge of adolescents and health care.

Minor Confidentiality, Covered Entity Communications, and Health Insurance

As covered previously, PHI may be disclosed for the purposes of payment of health services,
meaning that health insurance companies access and use medical records of minors for the
purpose of billing. While in some cases minors may have access to free or low-cost health care
without insurance, such as contraception and family planning services under Title X, access to
many services may be available only using insurance. After the use of a health service, the bill is
submitted to the insurance company, which then mails an explanation of benefits as well as the
remaining bill to the person insured. This presents a challenge to minors seeking confidential
services, as their parents will receive notification of their use of health care services even if the
health care provider keeps the records confidential. Parents may also receive notification of a
minors medical appointments through the health care system appointment reminders. Under the
Privacy Rule, minors may request for special considerations in the forms of communication used
by both health care providers and by insurance companies, such as the use of a personal cell
phone or email rather than the home phone, or that physical bills and explanations of benefits be


sent electronically instead of through the mail.41 However these requests are just that: requests.
Providers and insurance companies are under no obligation to provide these accommodations,
leaving a gap in the protection of minors health information. Creating a legal requirement for
providers and covered entities to honor requests for alternate forms of communication for minors
receiving confidential health care would cover this gap and further ensure minors access to
confidential health care.

Allowing adolescents confidential access to health care is critical in maintaining their overall
health and safety. The need to give adolescents privacy is tempered by the rights of parents to
care for their children and the rights of the State to act in best interests of both the minor and the
public. While there are some measures in place to protect adolescent health care privacy, there
are still many gaps in coverage. Additionally, laws are inconsistent across the nation with rights
of minors varying greatly by state. By enacting the federal regulations discussed in this paper,
privacy gaps could be filled while balancing the rights of parents to care for and speak for minors
in their care. This would be the best method to ensure adequate and universal coverage of the
privacy rights of minors.

41 English, A., Ford, C. A., The HIPAA Privacy Rule and Adolescents: Legal Questions and Clinical
Challenges, Perspectives on Sexual and Reproductive Health, March 2004, vol. 36(2), pp. 81.