Should your genetic information belong to you? Parents, is it your duty to provide your genetic information to your children in their medical interest? Children, do you have an ethical claim on your parents’ genetic information? What would you do with your parents’ genetic information? As we seek to answer these questions, we explore what parents owe to their children and ultimately ask: In a world where privacy is constantly decreasing, should parents have the right to keep their genetic risks private? How will society change if the most basic unit of heredity is no longer private?
On September 1, 2006, Cheri’s husband Bob was told that he carries the Huntington’s Disease (HD). This meant there was a 100% chance that Bob would develop HD. When they received the news, Bob was devastated. In Cheri’s words, on the “endless drive home that day,” Bob and Cheri decided there was no way they could ever tell their children, even though their HD support worker suggested telling the children. Cheri could not sit down with her three beautiful children, Katie ten years old, Erik eight years old, and Tyler only four years old, to not only tell them that their Dad has a disease that will cause him to lose control of his body by the age of 65 but that they too could have inherited HD from their father. In Cheri’s mind, the best option was to keep this knowledge secret in order to protect her children. The child of a person who carries HD has a 50% chance of inheriting HD. Therefore, each one of Bob and Cheri’s kids had a 50% chance of inheriting HD from Bob.
The case study presents the two main ethical questions that this research paper aims to address:
Were Cheri and Bob obligated as biological parents to inform the children of their genetic risk?
Did Cheri and Bob’s children have a right to know this genetic information about their father, since it had medical implications for them?
According to the Global Genes organization, one in every ten Americans, approximately 24 million people in America will be affected by a genetic disease in their lifetime. A quarter of those 24 million Americans are adoptees, who may know minimal information about their biological family’s genetic risks (Boice). However, any child may not be aware of his or her genetic risks. This paper explores the ethical issues around whether or not all children should have access to their parents’ genetic information, which would constitute a co-ownership of genetic information between a biological parent and his child. This essay explores four pertinent issues: the collection of genetic information, the parent-child relationship, the maintenance of high degrees of autonomy in both the child and the biological parents, and the privacy of the parent’s genetic information.
There is first a distinction needed between biological parents and social parents. Biological parents contribute some of their own genetic material to their children via meiosis that occurs during sexual reproduction. During meiosis, a male’s sperm and a female’s egg, each containing half a set of genetic material called a haploid, combine to form a diploid set of chromosomes. Even though it is the recombination of both parents original genetic information, the offspring produced are completely unique genetically. Social parents are the parents who raise the child.
Genetic information can provide insight into someone’s predisposition to certain diseases, even though there is a degree of uncertainty with regards to the genes an individual expresses. In this paper, the term “risk” refers to the percent chance that someone inherits a particular gene from one or both parents. Cheri and Bob’s kids are at risk of having the Huntington’s Disease gene mutation and therefore at risk of having HD. This paper uses “certainty” to describe when someone’s DNA definitely has a certain gene. It explores the difference between these two things- a child knowing that he certainly carries a gene and a child knowing that he is at risk of carrying a gene, based on his parents’ genetic information. Considering risk versus certainty is important, because a child’s genetic risks may help him to decide which genes he wants to be tested for certainly carrying.
Usefulness and Limitations of Genetic Information
Genes are the basic unit of heredity (Morris). Genome analysis can make predisposition to certain diseases evident. It is important to note that there are different versions of genes that code for any trait. Therefore, the trait will be expressed differently in different people, based upon which versions of the gene a person inherits. The different versions of gene are called alleles There are dominant alleles and recessive alleles. There are two alleles per trait for most traits. One version of the allele will be expressed and one version will not. There are also mutated genes that result in genetic disorders (Levine).
The process of genetic analysis involves sampling someone’s deoxyribonucleic acid (DNA). Only 2% of the DNA in chromosomes makes up the genome. The rest of the DNA helps with gene regulation—turning genes on and off. Genome analysis can reveal diseases caused by inherited mutated genes, which include autosomal recessive disorders, autosomal dominant disorders, and the deletion or mutation of bases in the DNA that result in altered proteins.
In an autosomal recessive genetic disorder, both versions of the gene from each parent must be recessive for the disorder to be expressed in the child. The actual expression of traits in the child is called the child’s phenotype. The abnormal trait in an autosomal recessive disorder will not be expressed if one or both of the alleles is dominant. For example, Phenylketonuria (PKU) is an autosomal recessive allele carried on chromosome 12, according to the U.S. National Library of Medicine, which causes a buildup of the amino acid phenylalanine. Phenylalanine is found in dairy products; if it builds up and clogs tissues without early detection, it can result in mental retardation. The parents must each have the recessive allele and pass the recessive version of the gene to the child for the child to express PKU. Each biological parent could be oblivious to the fact that he and she could carry the recessive allele and then pass it down to the child. Even though PKU is not fatal if someone with the disease follows a proper diet, having this genetic knowledge could allow him to take appropriate medical action.
However, some autosomal recessive diseases like Tay Sachs are immediately fatal. It causes protein build up in the brain, leading to mental retardation, blindness, and ultimately death. However, Tay Sachs is different than PKU, because there is no treatment or remedy for someone with Tay Sachs When there is no treatment for a disease, there are additional issues to consider when exploring whether or not a child should be able to access this risk. These issues will be discussed later in the paper.
Autosomal dominant disorders occur when only one or more dominant alleles is needed for the disorder to be expressed. Even though it is usually not 100% definite someone will express a a genetic disease, Huntington’s Disease is a famous but extremely rare autosomal dominant disease that helps to illuminate the ethical dilemmas in the case: If a child’s parent has the HD gene, there is a 50% chance that the child will himself have HD at some point in his lifetime. Since degree of certainty that someone will express HD if they have the gene is 100%, it is the disease that this paper uses in its original case study to clearly think about the implications for a child in worrying about whether he or she has HD.
However, there are limitations on the usefulness of genetic information. The environment has a large degree of control over the expression of traits found in the genotype. The degree to which the environment affects the expression of traits coded for in the genome will not be discussed in this paper, even though it is important to consider. Additionally, multifactorial traits called polygenic traits are influenced by more than one gene, such as skin color or eye color. Many times, true eye color expression is unpredictable. (Morris).
A considerable drawback to technological improvements is the hefty cost of genetic analysis, which warrants a discussion about financial access to genetic sequencing services that will not be addressed in this paper. A discussion about access to the technology must come with a discussion about the process undergone by patients who can access the technology.
There are three major steps to the DNA collection process, which include payment, informed consent verification, and a blood sampling. Someone first either pays out of pocket, or with an insurance company plan. If someone pays with insurance, the test is documented in the insurance company’s records, which raises issues of privacy that will be addressed later. Because the information is so sensitive, it may require greater security measures. Someone then signs an informed consent form and provides a means of identification. Then, a cheek swab or blood test is done. With a DNA sample, someone can opt for exome sequencing that takes only a few hours, because specific locations on the genome are targeted for analysis. However, whole genome analysis would be most logical for adults to undergo, because it provides more thorough insight into genetic predispositions.
The Spectrum of Parent-Child Relationships
This section of the paper combs out the duties of biological parents. It explores the following question: Is the full disclosure of the child’s biological parents’ genetic information part of their parental duty?
All parents have duties. Social parents have custodial duties. Custodial duties contribute to the child’s immediate welfare (le Sage, Leonie, and Doret de Ruyter). There are physical custodial duties, emotional custodial duties, and moral education custodial duties. Physical custodial duties entail providing resources to children where available, such as nourishment and clothing. Emotional duties include attention to the child in some way that may manifest itself differently in every social parent-child relationship. There is also a moral education duty to support pro-social behavior, to act as a guiding example, to discipline the child, and to define values. The social parents contribute the child’s immediate care and are also therefore linked directly to the child’s physical, medical, and emotional welfare. They are always obligated to do what they can to maintain a healthy child.
It cannot be said that a biological parent necessarily has these physical and emotional responsibilities. If the biological parent is not the social parent, which occurs in the case of adoption, they do not have those custodial responsibilities. However, the biological and social parents seem to have comparable responsibilities; they matter equally but differently.
The biological parents contribute their genetic material to the child and are thereby directly linked to the child’s physical welfare. This link can be made, because the biological mother and father’s genes collectively provide insight into the child’s likelihood of developing certain diseases. Because biological parents are still parents, some believe they are obligated to provide children with all care available in the medical interest of the child; therefore, people could say parents should provide their children with their own genetic information, because not providing this information where it could be medically helpful for the child would constitute negligence.
Even though there are limitations that may prevent both social and biological parents from fulfilling their duties, both still have the responsibility to provide for their children to the best of their ability—in different ways. Additionally, not all biological parents are in contact with their children in various circumstances. However, the genetic information of the biological parent genetic could still arguably be invaluable to the biological child. It could even be argued that biological and social parents are equally important in a child’s life, because the biological parents’ genetic material directly affects the child, and the care of the social parent does, too. After considering the impact of genetic information in a biological parent-child relationship, both the both the child and the child’s biological parents’ right to autonomy must be explored.
Autonomy with Regards to the Child and his or her Biological Parents
Two Kinds of Autonomy
This paper will focus on two ways to discuss autonomy—ascriptive autonomy and descriptive autonomy. Every child and biological parent has an inherent and fundamental right to self-governance that many like Immanuel Kant, describe as freedom of will. The idea that there is value in making an independent decision, in spite of all circumstances, constitutes ascriptive autonomy. However, the degree to which people can exercise autonomy varies; the idea that autonomy can be measured using four criteria comes from the philosopher Richard Fallon. It is called descriptive autonomy. His four criteria to measure descriptive autonomy are the following:
- One’s ability to be self-critical
- One’s competence
- One’s knowledge of all options one can pursue
- One’s freedom from coercion
Richard Fallon’s four criteria of descriptive autonomy can be applied to the biological child as a stakeholder in the ethical dilemma. Before entering into discussion, it is important to acknowledge that this paper supports that ascriptive autonomy is an inherent right due to all. Even though descriptive autonomy varies based on many circumstances, it should be maximized in order to provide the greatest good for the greatest number of people. Ultimately, the utilitarian framework of ethics will form the groundwork of this discussion.
In the context of sharing genetic information, discussing autonomy directly brings up the issue of privacy, but privacy will be addressed in the next section.
Autonomy of the Child
Richard Fallon’s four tenants of descriptive autonomy can be applied to the child in his autonomous medical decision-making process. The child discussed is the biological child of two parents but not necessary under the age of 18. In order to increase the child’s descriptive autonomy, a child should be provided with a genetic counselor. In every possible argument, this paper supports that a genetic counselor would be needed to guide the child through a process of self-criticism to check that the child is mentally competent and to discuss who should temporarily own the information if it is determined that the child is incompetent. The genetic counselor would need to provide all options to the child and to remain unbiased. This section describes four arguments that conflict in trying to decide whether children should be able to access their parents’ genetic information.
The first argument, based on ascriptive autonomy, puts forth that children ideally live their lives how their wish, regardless of their parents. Whether their decisions are informed or not, their decisions will still be made independently, which is arguably meaningful. This view supports that child should have access to his or her biological parents’ genetic information.
The second view supports that even when a child is at risk of carrying a disease like Tay Sachs for which there is no cure, the child can make the decision for himself about whether or not he will get tested for the disease with the help of a genetic counselor. The main idea is that children can choose to act in response to the genetic information provided to them or to ignore it. Either way, the child’s actions will constitute a great degree of descriptive autonomy. Even though the child may not have all information about genetic risks that exists, he will have enough reasonable information to make highly descriptive autonomous decisions.
The third pull in favor of children accessing their biological parents’ genes is the adoptee stakeholder. Adoptees do not have direct contact with their biological parents and essentially have separate social and biological “parts” of their lives. The social part evolves completely around their experiences and emotions. The biological part has a large degree of influence over the social experience. If an adoptee had access to his biological parent’s genetic information, he would gain new insights into himself, increase his medical competency, gain access to all relevant medical information about his parents, and he could do so in an unbiased environment. In her book Experiencing the New Genetics: Family and Kinship on the Medical Frontier, Kaja Finkler discusses a study that deals with children whose parents have genetic disorders; the study shows what children do with the news that they themselves could have a genetic disease, based on family histories. In her book, she presents a group of women with family histories of breast cancer who need explanation about the implication of genetic inheritance. Finkler reports that the women who acted in response to the genetic risk perceived “their actions as beneficial to themselves and to their families.” In a similar way, adoptees with the opportunity to act in response to previously unknown genetic risks could be able to determine specific diseases for which they want to be tested. However, the legal disconnect between adopted children and their biological parents is a systemic issue that cannot be addressed in this paper.
The fourth argument is one that takes into account the various maturity levels of children. It suggests that children could be unnecessarily burdened with their parents’ genetic information at any age and especially before the age of 18. The claim is based in perceived emotional and intellectual immaturity of the child in the decision-making realm. It is possible that children could have a low degree of descriptive autonomy, f all four areas of Fallon’s criteria are not fulfilled to high degrees. The child might not be able to be purely self-critical or competent because of its emotions, will not be able to interpret all information. There is also a fear that there is room for misinterpretation between a child and a genetic counselor.
The issue that next arises is the age at which a child could be given access to his parents’ genetic information, which is when the parent’s descriptive and ascriptive autonomy clash with the child’s descriptive autonomy. Three arguments arise with regards to the issue of age.
The first view supports that a child should never be granted access to his biological parent’s genetic information, because the privacy of the parents always trumps the importance of child’s medical descriptive autonomy. Support for the “never” stance could come from social parents who adopt children, because the information might not suit the family situation.
The second argument argues in favor of giving children the ability to the information access at birth, since genetic diseases may affect a person in early childhood; it can be argued that it would be helpful for a child to know its predisposition to all diseases at birth. Even though small children cannot comprehend genetic information or work with a genetic counselor, a genetic counselor would potentially handle this information until the counselor makes the evaluation that the child fulfills the competency criterion of descriptive autonomy.
The third argument suggests children’s access to the information after the legal age of autonomy, which is 18 in the US. It is the legal and cultural age of independence when full autonomy is assumed. The child can be considered an “adult,” with a developed brain and life experiences that could improve his competency. However, a genetic counselor would still be required, in order to ensure a high degree of descriptive autonomy. The possibility would give the biological parents the ability designate the age at which the child would have access to their genetic information. However, a majority of biological parents may not know their own genetic predispositions. The biological parents’ competency would also have to be evaluated. Even though all biological and social parents do have a right to making individual parenting choices, the biological parents could delay the age of access until a time when the information would no longer be helpful to the child in making future medical plans.
It seems that empowerment by increasing the child’s overall descriptive medical autonomy outweighs potential psychological burdens, because the child is only informed of risk. He is not informed that he certainly has or does not have a disorder. However, if he chooses to discover whether or not he certainly has a genetic disorder by receiving his own genetic analysis, he could then be able to make future health plans for himself.
Biological Parents Autonomy
Four clear arguments support that parents should be able to conceal their genetic information from their children. The first argument takes into account that the biological parents may not want to know about their own genetic information. However, they could find out about their genetic risks if they are also the social parents. Without intentionally hurting his biological parents, a child could potentially wound a biological parent emotionally if he shares information with the biological and social parent that he or she did not want to know.
The next argument deals rather with a biological parent who may not want his child to know information about him. The biological parents might worry about his or her self-image in the eyes of the child if the child. gains access to the genetic information. As discussed in the opening case study, Bob worries that his genetic diagnosis will define him in the eyes of his children.
There is a major conflict with biological parents who are not also the social parents of their children, which brings up a third argument. Even though biological parents have made a decision not to be or have been deemed incapable of being in the child’s life and are not the social parents, there is a risk that their genetic information will provide a link to them if the child attains it. This has major implications for sperm banks. If men have to provide their genetic information along with their donation, they may be discouraged from donating. Regardless of whether or not the biological parents are in this child’s life, they may not want to burden or overwhelm the child with genetic information, because they feels that it would constitute bad parenting.
The fourth argument suggests that 21st century parental obligations could be evolving to require biological parents to make their genetic information available to their children. For example, parents give up some of themselves to fulfill their custodial responsibilities anyway; any social parent’s ability to act freely is limited. Even though parents still have the freedom to choose parenting methods, their life options become limited, because they have duties to their children. Unplanned pregnancies must also occupy a place in the issue. The biological parents in an unplanned pregnancy should still provide as much as they can for their child, even if the child is carried by a surrogate mother or does not live with the biological parents. This could imply that the child should be given access to the biological parents’ genetic information so he can decide if he wants to opt for targeted genetic tests in the future. The biological parents would thereby maximize their child’s medical descriptive autonomy, regardless of their parental status.
Privacy Concerns of Parents
Privacy is a major consideration in this issue. The Genetic Information Nondiscrimination Act of 2008 protects Americans from discrimination based on their genetic information in both health insurance and employment realms. The law also holds that the privacy of minors must be respected; parents do not have full access to their child’s medical records. This section explores why children accessing their parents’ genetic information could violate parental privacy, which is closely associated with respect for the biological parents’ ascriptive autonomy.
A distinction needs to first be made between medical records and genetic information. A medical record is a physical history of a person and does not include any information about future risk. On the other hand, genetic information describes a person at present and a person’s potential future risks. It also reveals information about prior generations in a family. Arguably, genetic information is significantly more sensitive for this reason. Parents do not have access to a child’s medical records, because a parent may treat a child differently if he knew about the child’s genetic predispositions. While there is little that the child’s genetic information could tell the parent about himself already, it could reveal things about one biological parent to the other. Additionally, parents could try to interfere in the child’s medical decisions if they had access to the child’s records. For example, a 16 year old who gets a prescription for birth control from her doctor may have parents who do not approve of birth control, but she has a right to access this care.
However, there are two key reasons why it could be acceptable for a parent to access a child’s medical records. The parent could guide the child to make informed medical decisions. Additionally, it might be beneficial for a parent to know a child’s information in order for the parents to create a suitable home lifestyle to adjust to child’s needs.
Even though the privacy of biological parents would be breached, many say that a child has a lot to gain from his parents’ genetic information, based on all that can be learned from genetic information. The child could learn what alleles he at risk of inheriting and then decide for himself what he wants to get genetically tested for, based on his needs and wants. The child’s decision to get tested or to not get tested for certain diseases he is at risk for will be relative to his goals. A child’s may have immediate goals to pursue interests, projects, school and social lives, activities, or sports; however, a child may prefer to focus on long-term health goals and choose to get genetically tested. If a child learns that both of his parents carry a mutated cystic fibrosis gene, for example, there is a 25% chance that the child has cystic fibrosis. With Cystic Fibrosis, food digestion and cardiovascular function is made very difficult. If the child is looking to pursue a season of track and field, he may choose not to get tested, because this knowledge could affect him psychologically; however, if he is trying to pursue starting a family, he may want to know if he is a carrier of the mutated gene.
Discrimination is one issue that presents itself in the privacy discussion. It stems out of a discussion about whether or not there is a greater need for when the genetic information is more useful or revealing. However, genetic discrimination can affect a subpopulation of people negatively. While employers can adjust their health insurance budgets to better gauge how much they need to budget for employee coverage, insurance companies could raise health insurance premiums for people who are genetically predisposed to more illness. They could begin to favor people who are genetically more affordable.
A final reason to prevent children from having access to their parents’ genetic information is that it is morally inappropriate for a child to be able to breach the privacy of parents’ medical records.
After considering the potential risk of discrimination and the sacrifice of the biological parent’s privacy, it is evident that privacy is the issue that makes this dilemma most controversial.
This paper has weighed the importance of the following issues: the collection and value of genetic information, the parent-child relationship, the degrees of autonomy sustained by both the child and the biological parents, and privacy.
If a child knows its risk of disease based on its parent’s genetic information, it can create fear and uncertainty that can be emotionally exhaustive for a child—exhaustion that some cannot tolerate. However, knowledge of risk can be a positive thing for some children; it may be easier for someone to hear he has a 50% chance of carrying the HD gene than to know he certainly has the HD gene and therefore HD itself. Childbearing decisions are also a relevant part of the discussion. It applies to the original case study between Cheri and Bob. Bob’s children found out that they could have HD because of Bob. This information could help each child actively decide to get tested for HD in thinking about having kids. But if one child is not planning to have kids, he can actively plan to not get tested for the disease. Nevertheless, every child will be informed that it runs in the family and have the opportunity to make a decision about whether or not to get tested, stemming from a high degree of medical decision-making descriptive autonomy.
Providing children with their biological parents’ genetic information is a feasible way for all biological parents to fulfill their custodial duties and to give children a high degree of medical descriptive autonomy in deciding which disorders they may want to get actively tested for. Privacy is a valid concern in a rapidly developing, technologically based society and warrants further discussion about enforcement mechanisms. However, a genetic counselor would play an integral role in the process of a child gaining access to its parents’ genetic information, likely at the child’s age of legal autonomy. Even though there is no discussion of enforcement in this paper, all biological parents should be required to provide their genetic information for their children, because every child should have maximal descriptive autonomy moving into a modern society with increasing medical options. With his parents’ genetic information and the help of a genetic counselor, a child at the age of 18 can be self-critical and competently ask himself whether or not he wants to get a genetic test, which is ethically sound. Whether or not a child chooses to get genetically tested for certain disease predispositions is a decision he can choose for himself, based on his own values, goals, and needs.
By Sara Ramaswamy