Mapping Public Policy for Genetic Technologies

Chapter 11. Family Issues

This chapter was prepared by Kelly Fox, policy specialist in NCSL’s Employment and Insurance Issues Program.

Information Contained in this Chapter

Adoption

Why Is Genetic Information Needed or Used in Adoption?

What Are the Policy Implications?

State Laws

Paternity

Why Is Genetic Information Needed or Used in Paternity?

What Are the Policy Implications?

State Law

Other Issues

Conclusion

Genetic technology has progressed to influence family issues as well as other legislative areas. Adoption, paternity and reproduction all are influenced by advances in genetic technology and, as such, all three areas are potential areas for public policy concern.

When considering adoption, it is important to consider all three groups of the triad–adoptees, adoptive parents and birth parents. When considering paternity issues, the rights of the birth father and mother, as well as those of the child, are the primary focus. For issues surrounding reproduction, it is important to consider parental rights, the child’s rights and the effect on society as a whole.

Adoption

Why Is Genetic Information Needed or Used in Adoption?

The primary issue for legislators is balancing the privacy rights of the triad–the adoptees, the adoptive parents and the birth parents. The protection of individual medical records is upheld by federal and state laws. Except under some circumstances (i.e., health insurance) medical records are considered private and do not have to be disclosed to anyone. It is important to remember these laws when drafting legislation that seeks to mandate disclosure of medical and genetic information. Usually, the information requested by the adoptive parents is used to decide whether to adopt and, if so, to determine potential genetic characteristics that may affect the child and the health care of the child.

Included in these recent requests for release of medical and genetic information is a concern by adoptive parents who are told they are adopting a perfectly healthy child and later learn that the child has problems ranging from behavioral problems to a more serious medical problem. Parents who have experienced this adoption agency deception, whether it is intentional or unintentional, are beginning to seek recourse under what is now being termed "wrongful adoption."

From the perspective of the adoptive child, disclosure of genetic information may prove to be detrimental to his or her chance of being adopted. If full disclosure is required before the adoption there is increased risk that he or she may be passed over. The damaging gene may or may not be recessive and, as such, may or may not become a problem for the child and the adoptive family, but could influence the decision to adopt. This form of discrimination poses an equally difficult problem for state agencies that are attempting to place a child through the adoption process and for the welfare system. Those children who have potential genetic problems may be excluded from the traditional adoption process and left in the care of the state. This will potentially create a genetic under class and a cycle in which a class of individuals becomes dependent upon the state for their basic needs throughout their lifetime. When drafting legislation, it is important to balance this potential for discrimination with the need for medical and genetic information.

The natural parents also have concerns that should be addressed. Disclosure of their medical and genetic information to adoption agencies and the adoptive parents exposes personal, confidential information and may lead to an abuse of information. This abuse may occur if either the agency or the parent believes it is proper to disclose the information to the public. A nongenetic example is that some believe those individuals who test HIV positive should be placed on a public list. It is argued that this list is for public protection, but such a list also can be used to discriminate. The potential for this type of abuse should be considered when drafting legislation.

What Are the Policy Implications?

Genetic information and adoption have five areas that should be examined when drafting legislation.

Individuals need to know information about their family’s genetic makeup to answer questions such as "What medical conditions are a part of your family history?" These questions often are asked during routine health exams. Should biological parents be required to give this information to adoptive parents at the time of adoption? If so, how is the privacy of the birth parents protected?
Do adoptive parents have a right to know the genetic and medical history of the biological family before they adopt a child? If so, to what extent? Do they have the right to know every ailment or problem—whether it be physical or psychological—about the child they are adopting? If they do, how is the biological family’s right to privacy addressed?
Is it a basic right for individuals to know their family medical and genetic history? Or, is this a privilege and, therefore, disclosure to immediate family should not be mandated?
Should there be a legal obligation for adoptive parents to contact the biological parents if a previously unknown genetic disorder is discovered in the adoptive child? How many years after the adoption should the adoptive parents be responsible for reporting such conditions? How would such a law be enforced? How would such information be tracked to ensure compliance?
Should there be a legal obligation for birth parents who place a child for adoption to contact the adoptive agency if a genetic condition that may affect the adoptive child is found after adoption? What obligation should be in place? How many years after adoption should the biological parents be responsible for reporting such conditions? How would such a law be enforced? How would such a law be tracked to ensure compliance?

State Laws

Most states allow adopted children—when they reach 18 years of age—and adoptive parents to obtain nonidentifying information about the child before he or she was adopted and limited information about the biological family. Most states do not require information to be kept on file about the biological family and this information therefore is basically limited to medical histories as opposed to specific genetic information.

Some states—like Maine and Arizona—require medical history and genetic information be provided to prospective adoptive parents. Other states—like Rhode Island—have set up a voluntary adoption registry. This registry allows information to be accessed by the adoptive family as well as the biological family and is updated by both parties periodically. (See Table 11-1)

Paternity

Why Is Genetic Information Needed or Used in Paternity?

Genetic information is used to determine who is the father of a child if the child was born out of wedlock or thought to be conceived during marriage by a man other than the husband. This determination is important in assessing child support and other financial obligations. Disclosure of information is also the focus of attention with paternity issues. Most states have addressed this issue by removing the privacy protection and allowing the information to be disclosed to the mother and in some cases to be admitted as evidence in court and made a part of public record.

The cost of any genetic test remains expensive and paternity tests are not an exception. Payment for the tests is an additional issue. Insurance companies typically will not pay for paternity tests. Typically, this burden has been placed on the individual who contests the identity of the father.

What Are the Policy Implications?

Genetic information and paternity have two critical areas that should be examined when drafting legislation.

Issues surrounding the disclosure of paternity information include to whom this information is disclosed—to the alleged father only, to the mother of the child, to involved spouse, to the child, only to the individual questioning the paternity, or to others?

Issues surrounding the costs associated with this test include whether insurance plans should be required to pay for this test? If not, whose responsibility is the cost—the mother's, the alleged father's or both? Should the state pay a portion of this cost, especially for individuals who are indigent? Whose responsibility is it to assume the remaining cost—the mother's, the alleged father's or both?

State Law

In 1997, several states addressed the issue of paternity by including DNA testing as part of the determination of paternity and sought to establish guidelines for how accurate the test must be to legally identify a man as the father of the child. For example, Virginia considered legislation that would require the genetic blood test to show at least a 98 percent probability that the man is not the father before the legal parent-child relationship may be terminated. (see tables 11-1 and 11-2).

Other Issues

As technology improves, more infertile women are turning to in vitro fertilization (IVF), a procedure in which eggs are retrieved, fertilized in a laboratory and inserted into the uterus. With this improved technology and increased use come questions of regulation and whether the state should intervene.

A byproduct of the IVF procedure is extra embryos. The procedure always involves removing more eggs than needed. Not all eggs are immediately fertilized and not all embryos are inserted into the uterus. Questions exist about what should be done with the unused eggs. They can be frozen for up to 20 years, but many eggs are lost during the freezing and thawing processes. Options that exist are disposing of the eggs after the woman has become pregnant or donating the extra eggs to other infertile women. Questions arise from the potential use of these extra eggs. For example should the state be responsible for regulating how these eggs are disposed or is it a woman’s right to freeze her eggs for future use by herself or others?

The press recently has given considerable attention to women in their 60s who have successfully borne healthy children with the assistance of IVF. These cases raise questions about whether there should be limits placed on the use of IVF. Proponents of IVF for older women argue that if men are able to have children into their 70s without the state regulating their ability to bear children, then women should be afforded the same rights. Those opposed argue that IVF should be used to ensure a child is born healthy and with a good start in life. They further argue that a major threat to that good start is for children to have parents who are too old to provide the necessary parenting.

Technology now allows us to monitor embryos for genetic disorders before uterine implantation. This procedure already is used for families who have a history of diseases such as cystic fibrosis. The procedure has successfully removed the disease and ensured the couple has a healthy child. Should limits be placed on this technology so it is not used to choose the physical characteristics with which parents want their child to be born?

Technology also has created a new form of surrogacy for infertile couples. Three types of surrogacy are currently available: artificial insemination, gestational surrogacy and donor surrogacy. Artificial insemination involves creating an embryo with the sperm of the father and the egg of the surrogate. Gestational surrogacy involves creating an embryo and transferring it to the surrogate. Donor surrogacy is created with either the sperm of the intended father or the egg of the intended mother and a donor egg or sperm and transferred to a surrogate to carry to term. Advances in technology have made surrogacy a viable option for many couples, but many of the questions that exist with traditional surrogacy have not been answered. Such questions include who is the natural mother, the woman who provides the host uterus or the woman who provides the egg?

Interest in issues surrounding reproduction is increasing every year as technology improves and is increasingly used. Very little regulation has occurred in this area to date.

Conclusion

Adoption and paternity laws are structured in hopes of achieving what is best for the child. Disclosure of genetic information in the case of adoption is a double-edged sword for the adoptive child. Although it is important that children and adoptive families have this information to provide proper care, it is equally important that this information not be used in a manner that leaves unadoptable those children who potentially have genetically based medical problems.

Disclosure of genetic information is being debated today in all arenas. When drafting legislation to give disclosure of information rights to some individuals in certain circumstances and prevent others from obtaining genetic information in different situations, it is important to consider that this legislation also may pose problems in areas that do not appear to be included in the legislation. (such as prenatal genetic testing and governmental screening programs). Disclosure rights in these areas also should be addressed when drafting legislation.

To Table 11-1. Adoption Disclosure of Information
To Table 11-2. Paternity Legislation Introduced in 1997

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