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 Article of Interest - SWIS

School-wide 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: APPENDIX 2


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 severe illnesses.

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 research.

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 studentsí confidentiality?
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 of students?
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 individuals?
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 interests.
(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 judicial authorities.
(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.

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