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Sterilization of Persons Who Are Mentally Retarded
Mentally retarded persons have the same basic rights as other citizens. (1) Among these rights are the rights, in conformance with state and local law, to marry, to engage in sexual activity, to have children and to control one's own fertility by any legal means available. Since sterilization is a method of contraception available to most North American adults, this option should be open to most retarded citizens as well.
However, recent reports on cases involving the sterilization of mentally retarded individuals without even the most elementary legal and procedural safeguards raise serious questions concerning the adequacy of current efforts to protect the human and constitutional rights of such citizens. Indications that retarded persons have been involuntarily rendered incapable of procreation because of presumed social irresponsibility, real or supposed genetic defects, or as a quid pro quo for release from an institution or receipt of financial assistance and social services are deeply disturbing, to say the least.
The American Association on Mental Deficiency is pleased that various legislators, governmental agencies, and a few other professional organizations have begun to speak out on the issue of sterilization. We believe it is our obligation, as the oldest and largest organization of professionals in the field of mental retardation, to make known our position on the matter, especially as it relates to mentally retarded persons.
II. Definition of Terms
A surgical procedure, the primary purpose of which is to render an individual incapable of procreating without impairing his or her capacity to engage in sexual activity.
Commentary: Sterilization, as presently practiced, differs from other methods of contraception in that its effects are usually permanent. Reversal requires additional surgery which is not predictably successful.
In the medical context sterilization is considered an elective procedure; the consequences are major, although the surgery itself is frequently minor.
B. Voluntary Sterilization:
Refers to the performance of a sterilization procedure with the informed consent of the patient, or, where the patient cannot give "informed consent," but would presumably do so if competent, with the concurrence of his or her personal representative (acting as a surrogate) and a court, acting in his or her interest.
Commentary: Currently (as of February, 1974), no jurisdiction has a statute prohibiting voluntary sterilization.(2) Such procedures are governed by the same general legal, ethical, and professional consideration's which apply to other forms of elective surgery. These considerations include informed consent, confidentiality of the patient-physician relationship, and the right and duty of the physician to refuse treatment which he or she believes is illegal, unethical, or medically unnecessary.
C. Involuntary Sterilization:
Refers to legally authorized sterilization of an individual without his or her consent, generally following professional review procedures set forth in law, but which is not voluntary as above defined.
Commentary: Twenty-one states currently have statutes permitting involuntary sterilization. Host such laws were enacted in the early part of the twentieth century, and had "protection of society," rather than of the individual, as their justification; in recent years, however, there has been a marked decline in their application to mentally retarded persons.
D. Legally Incompetent Person:
An individual who has been so adjudicated by a court of competent jurisdiction.
Commentary: Declarations of incompetence are ordinarily made by courts upon the advice of professionals. Persons so declared usually have guardians appointed by the Court to act in their behalf. Minors are generally considered incompetent under the laws of most states. The age of consent, which may be different from the age of majority in some states, is sometimes used as one basis for determining competence.
E. Person of Impaired Capacity:
An individual who has not been formally declared incompetent, but: (1) on the basis of professional assessment, is found to be sufficiently mentally impaired so as to be unlikely to make a reasoned and informed judgment about an issue as grave as sterilization; or (2) while possessing the mental capacity to make an informed judgment, is under some form of confinement or duress which limits his or bar freedom to exercise such judgment.
Commentary: Within our society, there is a significant group of persons, who, while never adjudged legally incompetent, in fact lack the mental capacity to form a reasonable decision on serious issues such as sterilization. A second group of individuals also fall within our definition of a "person of impaired capacity." These individuals say possess the intellectual capability to sake reasonably complex decisions on their own behalf but are under the control of or dependent upon an institution, agency, or individual for their support or survival. In such cases, the individual's freedom to exercise unrestrained judgment is restricted by the nature of his or her dependence on the provider agency or individual. For example, regardless of how benevolent the purposes and practices of a public or private residential facility for the mentally retarded may be, the individual resident is constrained by his or bar dependence on the facility for treatment and daily sustenance and, as such, is a person of "impaired capacity." There should be no presumption of incompetence (or of competence) associated with the designation of an institutionalized person as "Impaired."
Usually reform to a state court having jurisdiction in matters of competence and/or commitment of mental patients; however, the tars, as used here, say also be construed to mean an administrative review board, authorized by statute, provided at least one member is an attorney and at least one member is a professional qualified In the clinical and social evaluation of mentally retarded persons.
A. Involuntary Sterilization:
The American Association on Mental Deficiency strongly opposes the enactment and application of statutes that permit Involuntary sterilization.
Commentary: State statutes authorizing the involuntary sterilization of retarded persons are generally based on false and outmoded beliefs about the genetic mutability of mental retardation which were prevalent in the early part of this century. AAMD, therefore, favors the repeal of existing involuntary sterilization statutes affecting the mentally retarded and strongly discourages the application of such laws.
B. Voluntary Sterilization:
In order to facilitate protection of the rights of retarded citizens, and to guard against the possibility of imposing unwanted or unnecessary sterilizations, the general population can be divided into three classes: (1) competent persons or persons who are presumed to be competent; (2) legally incompetent persons; and (3) persons of impaired capacity.
Competent Persons: The competent person, or the person who is presumed to be competent, should have the right to exercise free and informed choice, without coercion or constraint, in the selection of contraceptive methods. Such an individual is not distinguished from any other citizen and therefore should be free to initiate the decision to control his or her own fertility and to elect the contraceptive method to be used, if any. Before such a person elects sterilization, the following conditions should be met:
He or she should be free from involuntary constraints, such as commitment or legal custody, and possible expressed or implied inducements or contingencies which are controlled by other individuals, agencies, or organizations.
Prior to reaching a decision, each individual should be informed about, and have access to, other less restrictive alternative forms of contraception. When other forms of contraception are provided they must be offered under circumstances which favor their effective use.
Prior to electing to be sterilized, the person should have a full explanation of the nature and likely consequences of the sterilization procedure and an opportunity to signify his or her understanding. If the person is unable to read, a verified record or transcription of the essential features of the oral interchange should be maintained.
Commentary: The intent here is to assure the maximum possible participation of an individual in decisions regarding his or her reproductive capacity. Therefore, the most rigorous guarantees possible of this participation are to be exercised. For example, an illiterate person might be competent to make a decision regarding sterilization; in this case a simple written transcript would be insufficient, and procedures and other assurances should be followed to prevent any possibility of the individual's not participating fully in the decision.
Legally Incompetent Persons: A legally incompetent person should never be sterilized involuntarily, and should be voluntarily sterilized only in those exceptional circumstances which have been reviewed and approved by a court of competent jurisdiction. Such court proceedings should be conducted in a manner designed to afford the individual all the procedural safeguards necessary to protect his or her individual rights. In conducting its work, the court should review and affirm that all of the following conditions have been met.
The individual is presumed to be physiologically capable of procreation;
The individual is or is likely to be sexually active in the near future;
Pregnancy would not usually be intended by a competent person facing
Less drastic alternative contraceptive methods have proved unworkable or are inapplicable;
The guardian of the person agrees that sterilization is a desirable course of action for his or her ward;
The Court has received advice based on a comprehensive medical, psychological, and social evaluation of the individual;
The person is represented by legal counsel with a demonstrated competence in dealing with the medical, legal, social, and ethical issues involved in sterilization;
The person, regardless of his or her level of competence, has been granted a full opportunity to express his or her views regarding sterilization and these views have been taken into account in determining whether to sterilize the individual.
Commentary: An individual who is incompetent should not be denied access to sterilization however, the legal, social, ethical, and professional safeguards outlined above should be applied rigorously to assure that the best interest of the retarded individual remains paramount in the decision-making process.
Persons of Impaired Capacity: Persons of impaired capacity, as defined in II, E, above, should not be sterilized, except with the approval of a court of competent jurisdiction. The same conditions set forth for sterilization of legally incompetent persons under III, B, 2, above, should apply, except that the additional approval of the next of kin (or if lacking such kin, of a guardian ad litem) should be substituted for the consent of the legal guardian of the person, if there is no legal guardian other than a public official.
Commentary: It is the intent of this guideline to ensure that retarded persons are afforded adequate safeguards against unwanted or unnecessary sterilizations. Therefore, where doubt exists as to whether the individual is capable of exercising an informed judgment or is under some form of custody or duress, the individual should be considered a "person of impaired capacity," and thereby afforded the additional protections offered under this guideline.
Adopted March 1974.