Logan Reid
DNA records are often shared by hospitals and doctors, but the extent of this sharing is not always clear to patients. In the case of newborn screening, for example, DNA samples are routinely collected and stored in state labs, and may be shared with outside researchers. This has raised concerns among some parents, who worry about the privacy and potential misuse of their children's genetic information. In the United States, electronic health records (EHRs) allow doctors within the same practice to access patient information, and up to one-third of hospitals share EHRs with external provider groups. Additionally, private and public health insurers can access EHR information for evaluating claims, and sensitive patient data has been shared with tech companies like Google. Direct-to-consumer DNA testing companies are also known to share user information with third parties, as long as they disclose their policies to users beforehand.
| Characteristics | Values |
|---|---|
| Who owns DNA records? | The government |
| Who collects DNA samples? | Hospitals, third parties on behalf of hospitals, and state departments of health |
| Who has access to DNA records? | Hospitals, doctors, health insurance companies, outside researchers, and state labs |
| Can DNA records be shared without consent? | Yes, in the case of newborn screening for genetic diseases |
| Can DNA records be sold? | Yes, companies can sell internet search details |
| Are there any regulations on sharing DNA records? | Yes, direct-to-consumer DNA testing companies must inform users about their data sharing policies beforehand |
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What You'll Learn
DNA tests and newborn screening
Newborn screening is a set of laboratory tests performed on newborn babies to detect a set of known genetic diseases. In the United States, newborn screening is mandatory for a defined set of genetic diseases, although the exact set differs from state to state. Almost every child born in the United States undergoes state-mandated newborn screening. For each state, a small blood sample is collected from each newborn within 48 hours of birth and sent to a laboratory for testing for a panel of genetic disorders. Newborn screening programs may screen for up to 50 diseases, including phenylketonuria (PKU), sickle cell disease, and hypothyroidism. About 3,000 newborns test positive each year for one of these severe disorders.
In the District of Columbia, the Newborn Screening Program aims to detect, diagnose, and treat every newborn who tests positive for certain inherited genetic disorders. The program requires all hospitals in the District to screen for 40 inherited genetic disorders that are treatable by diet, vitamins, medication, or anticipatory measures to prevent attacks. The screening includes tests for metabolic disorders and hemoglobin abnormalities.
The decision to include different tests in newborn screening programs is based on several factors, including the potential health benefits of each test, the costs and feasibility of screening, diagnosis, and treatment. New technologies have enabled the expansion of newborn screening programs, and efforts are underway to develop a national newborn screening program in the United States. As DNA sequencing becomes more accessible, it is predicted that whole genome sequencing will replace the current blood spot tests used in newborn screening.
Newborn screening plays a crucial role in saving lives and preventing disabilities in thousands of infants every year. Early detection allows for early intervention, which can lead to a significant reduction in disease severity and possibly even the prevention of the disease. It is important to note that newborn screening results are typically normal, and an abnormal result may simply indicate the need for further diagnostic testing.
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DNA records and patient consent
The issue of patient consent regarding DNA records is a complex and evolving topic, with ethical, legal, and privacy implications. The case of Henrietta Lacks, which gained prominence in 2010, highlighted the importance of patient consent and individual control over genetic information. Lacks' cells, taken without her consent, have been extensively used in biomedical research, raising questions about credit, acknowledgment, and privacy.
In the United States, federal laws such as the Common Rule and the Health Insurance Portability and Accountability Act (HIPAA) aim to balance scientific progress and patient privacy. However, the unique nature of DNA sequences poses challenges in truly anonymizing DNA data. While de-identified biospecimens are not subject to the informed consent requirements of the Common Rule, the potential for re-identification using genomic data paired with other sources remains a concern.
To address this, the National Institutes of Health (NIH) controls access to sensitive information in its databases, ensuring researchers respect participant privacy. Additionally, the Federal Trade Commission provides protections against companies making misleading statements about data privacy or failing to protect individuals' information.
Direct-to-consumer (DTC) genetic testing companies have also raised privacy concerns due to limited regulation. While many companies have informed consent policies, there are no federal laws prohibiting them from sharing genetic information with third parties. As a result, individuals' autonomy and privacy rights are at risk, emphasizing the need for clear and informed consent processes.
In the context of newborn screening programs, the timing of consent has been controversial. While most states collect and store newborn blood spot samples for DNA analysis, the opt-out approach has been criticized as insufficient for informed consent. Some states allow parents to decline based on religious or philosophical reasons, but this option is rarely exercised, possibly due to a lack of awareness or understanding of the program.
In summary, the evolving nature of genomic research and the increasing accessibility of DNA sequencing technology underscore the importance of patient consent and privacy protections. While legal and ethical frameworks aim to safeguard individuals' rights, challenges remain in ensuring informed consent, maintaining data anonymity, and respecting individuals' autonomy in sharing their DNA data.
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DNA data and privacy concerns
DNA data is highly sensitive and can reveal a lot of information about an individual, including their health, characteristics, ancestry, and familial relationships. As such, there are several privacy concerns surrounding DNA data.
One major concern is the potential for re-identification. Even if DNA data is shared without personal identifying information such as a name, phone number, or email address, it is possible for individuals to be re-identified. A 2019 study in the journal Nature Communications found that almost every American could theoretically be re-identified from any dataset containing at least 15 demographic attributes, such as zip code, gender, or number of children. This raises concerns about the potential for privacy invasions and the impact on civil liberties, especially for communities of color, who are already disproportionately targeted by law enforcement.
Another concern is the sharing of DNA data with third parties. Direct-to-consumer genetic testing companies often collect and share a wide variety of personal data, including information such as names, addresses, email addresses, and health data. While these companies may promise to protect consumer privacy, there is no guarantee that they will not share data with partners or third parties without explicit consent. In some cases, companies may be bought, sold, or go out of business, and it is unclear what happens to consumer data in these situations.
There are also concerns about the security of DNA data. With the increasing prevalence of hacking and biometric surveillance, there is a risk of DNA data being breached or accessed without authorization. While companies may have measures in place to protect data security, there is no guarantee that these measures are effective or that data will not be sold or shared inappropriately.
Furthermore, there are concerns about the accuracy of genetic testing and the potential for deception or unfair practices. Some companies may overstate the accuracy of their tests or make deceptive claims about their algorithms or AI capabilities. Consumers may not be fully aware of the limitations of genetic testing and the potential for inaccurate results or interpretations.
Lastly, there are concerns about the lack of legislative protections for genetic privacy. The Genetic Information Non-discrimination Act (GINA) is currently the only law that specifically addresses genetic privacy, but it is narrow in scope and primarily focuses on banning employers or insurance companies from accessing genetic information. There may be a need for more comprehensive legislation to protect consumer privacy and ensure that DNA data is not used inappropriately or without consent.
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DNA samples and insurance companies
The Genetic Information Nondiscrimination Act (GINA) bans employers or insurance companies from accessing genetic data. However, this law is considered too narrow in scope by privacy experts, as it does not cover all types of insurance companies. For example, Florida state law prohibits the use of genetic information in life, disability, or long-term care insurance underwriting, but this is not the case in many other states.
Direct-to-consumer genetic testing companies, such as 23andMe, AncestryDNA, and MyHeritage, have internal policies that prohibit or restrict genetic discrimination. These companies state that protecting customers' privacy is their highest priority, and some allow customers to delete their data or revoke permission for data sharing. However, it is difficult to verify that genetic profiles or physical samples have been destroyed.
There is a risk that data shared with these companies may be passed on to other partners, and it is unclear what these partners may do with the data. While these companies may fight requests from law enforcement, there have been cases of law enforcement uploading suspect DNA samples to open databases.
The use of consumer DNA testing kits can lead to unintended consequences. In the case of life insurance, consumers may gain an advantage by learning about their personal genetic risks before the insurer. However, life insurance companies are likely to push for policies and premiums that reflect actual mortality risk, which may result in higher premiums for consumers.
Overall, while there are laws and policies in place to protect genetic data from insurance companies, there are still risks associated with sharing DNA data with consumer genetic testing companies. Consumers should be aware of the potential consequences and understand what private information they are giving up.
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DNA testing and government involvement
In the US, newborn screening programs collect blood samples from the heel of a newborn infant to analyse and identify any genetic or metabolic disorders. This is done under state law, and the samples are stored for years, creating a trove of genetic information for research. The government owns this DNA data, and there are concerns about informed consent and privacy. Some states allow parents to decline the screening, but this is rarely exercised, and the option may not always be presented clearly.
The use of DNA testing kits from companies like 23andMe, Veritas Genetics, and Ancestry is booming, providing consumers with insights into their health and ancestry. However, there are risks to sharing DNA data with these companies, as law enforcement and the federal government can pressure them to share data. While companies may resist and require subpoenas, there are limited restrictions on law enforcement's ability to use DNA profiles from commercial genealogical databases in criminal investigations.
The privacy policies of DNA testing companies state that they will not share individual-level data without explicit permission. However, consumers may not fully understand the privacy risks, and their data can pass through many partners. There are concerns about the accuracy of these tests and the potential for questionable health decisions based on the results.
To address these concerns, stronger statutory protection of genetic information has been proposed, especially for children's DNA data, as parental consent may not be sufficient. The FTC is also focused on protecting biometric information, including genetic data, and has taken enforcement actions against companies making deceptive claims about the accuracy of their genetic testing products.
As DNA sequencing becomes more accessible, whole genome sequencing may replace current blood spot tests, creating new opportunities for research and potentially identifying more genetic mutations related to diseases.
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Frequently asked questions
Hospitals and doctors may share DNA records with third parties, including insurance companies, government departments, and outside researchers. In the US, newborn screening for genetic diseases is mandated by the government and is often done without the parents' consent. DNA records are stored in state labs indefinitely, and these labs are allowed to share DNA samples with outside researchers.
In the US, 43 states allow parents to decline newborn screening based on religious beliefs or philosophical reasons. However, this option is rarely exercised, as most parents only hear about the program after the mother has checked into the hospital for delivery. Direct-to-consumer DNA testing companies can share identifiable user information with anyone, as long as they inform users about their policies beforehand.
To protect your DNA records from being shared, you can choose to pay for DNA testing out of pocket to avoid insurance companies from having access to your records. You can also carefully review the privacy policies of DNA testing companies before agreeing to their services and opt for companies that do not share individual-level data without explicit permission. Additionally, you may choose to decline newborn screening in certain states if you have religious or philosophical objections.
