Information System (SWIS)
Discussion and Issues of Privacy
by Mark McWilliams, Michigan Protection & Advocacy
Service, Inc., February 16, 2003
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Excerpt from NIH OHSR Ethical Guidelines:
THE ETHICAL PRINCIPLES OF THE
The Belmont Report--Ethical Principles and Guidelines for the
Protection of Human Subjects, which was published in 1979,
provides the philosophical underpinnings for the current laws
governing human subjects research. Unlike the Nuremberg Code
and the Helsinki Declaration, which consist of "guidances" or
"rules", The Belmont Report establishes three fundamental
ethical principles that are relevant to all research involving
human subjects: Respect for Persons, Beneficence, and Justice.
Although other important principles sometimes apply to
research, these three provide a comprehensive framework for
ethical decision-making in research involving human subjects.
1. The principle of Respect for Persons acknowledges the
dignity and autonomy of individuals, and requires that people
with diminished autonomy be provided special protection. This
principle requires that subjects give informed consent to
participation in research. Because of their potential
vulnerability, certain subject populations are provided with
additional protections. These include live human fetuses,
children, prisoners, the mentally disabled, and people with
2. The principle of Beneficence requires us to protect
individuals by maximizing anticipated benefits and minimizing
possible harms. Therefore, it is necessary to examine
carefully the design of the study and its risks and benefits
including, in some cases, identifying alternative ways of
obtaining the benefits sought from the research. Research
risks must always be justified by the expected benefits of
3. The principle of Justice requires that we treat subjects
fairly. For example, subjects should be carefully and
equitably chosen to insure that certain individuals or classes
of individuals -- such as prisoners, elderly people, or
financially impoverished people -- are not systematically
selected or excluded, unless there are scientifically or
ethically valid reasons for doing so. Also, unless there is
careful justification for an exception, research should not
involve persons from groups that are unlikely to benefit from
subsequent applications of the research.
Each of these principles carries strong moral force, and
difficult ethical dilemmas arise when they conflict. A careful
and thoughtful application of the principles of The Belmont
Report will not always achieve clear resolution of ethical
problems. However, it is important to understand and apply the
principles, because doing so helps to assure that people who
agree to be experimental subjects will be treated in a
respectful and ethical manner.
Legal and Ethical Issues in School Data Collection
Michigan Positive Behavior Support Network,
February 13, 2003
Schools are turning to data-driven models of school management
and student instruction to meet outcomes set forth in Federal
and state law and current educational practices. With the
increased collection and use of data comes a number of
questions about student protections.
1. Do web-based databases provide adequate protection of
2. Do schools have policies in place to limit dissemination of
student data among school staff?
3. Do schools have an obligation to disclose behavior data to
law enforcement or juvenile court officers?
4. Do data systems provide accurate and specific guidelines
for data entry and classification to prevent improper labeling
5. Does the use of data for research bring students within the
coverage of ethical standards protecting human subjects? If
so, is application of the classroom activity exception
consistent with the spirit of such standards?
6. Does the inclusion of medical information subject schools
to privacy requirements under HIPAA?
7. Are specific data systems, especially those tailored to
identify systemic trends, appropriate for use with
8. How is behavior data treated under FERPA?
34 CFR 99.31 Under what conditions is prior consent not
required to disclose information?
(a) An educational agency or institution may disclose
personally identifiable information from an education record
of a student without the consent required by Sec. 99.30 if the
disclosure meets one or more of the following conditions:
(1) The disclosure is to other school officials, including
teachers, within the agency or institution whom the agency or
institution has determined to have legitimate educational
(5)(i) The disclosure is to State and local officials or
authorities to whom this information is specifically-- (A)
Allowed to be reported or disclosed pursuant to State statute
adopted before November 19, 1974, if the allowed reporting or
disclosure concerns the juvenile justice system and the
system's ability to effectively serve the student whose
records are released; or (B) Allowed to be reported or
disclosed pursuant to State statute adopted after November 19,
1974, subject to the requirements of Sec. 99.38. (ii)
Paragraph (a)(5)(i) of this section does not prevent a State
from further limiting the number or type of State or local
officials to whom disclosures may be made under that
paragraph. [[Page 298]]
(6)(i) The disclosure is to organizations conducting studies
for, or on behalf of, educational agencies or institutions to:
(A) Develop, validate, or administer predictive tests; (B)
Administer student aid programs; or (C) Improve instruction.
(ii) The agency or institution may disclose information under
paragraph (a)(6)(i) of this section only if: (A) The study is
conducted in a manner that does not permit personal
identification of parents and students by individuals other
than representatives of the organization; and (B) The
information is destroyed when no longer needed for the
purposes for which the study was conducted. (iii) If this
Office determines that a third party outside the educational
agency or institution to whom information is disclosed under
this paragraph (a)(6) violates paragraph (a)(6)(ii)(B) of this
section, the educational agency or institution may not allow
that third party access to personally identifiable information
from education records for at least five years. (iv) For the
purposes of paragraph (a)(6) of this section, the term
organization includes, but is not limited to, Federal, State,
and local agencies, and independent organizations.
34 CFR 300.529 Referral to and action by law enforcement and
(a) Nothing in this part prohibits an agency from reporting a
crime committed by a child with a disability to appropriate
authorities or to prevent State law enforcement and judicial
authorities from exercising their responsibilities with regard
to the application of Federal and State law to crimes
committed by a child with a disability.
(b)(1) An agency reporting a crime committed by a child with a
disability shall ensure that copies of the special education
and disciplinary records of the child are transmitted for
consideration by the appropriate authorities to whom it
reports the crime.
(2) An agency reporting a crime under this section may
transmit copies of the child's special education and
disciplinary records only to the extent that the transmission
is permitted by the Family Educational Rights and Privacy Act.