This paper will examine the ethics of marketing prenatal genetic testing to pregnant women. We will examine the issue from several perspectives and ask the question “Are medical tests always “appropriate for their intended and promoted uses”? We will also make recommendations for addressing the issues that are identified. Among other dictates, the American Marketing Association (AMA) Code of Ethics states, “Marketers must foster trust in the marketing system; products are appropriate for their intended use; and promoted uses and communications about goods and services are not intentionally deceptive or misleading”.
In areas of the country where health literacy - or even literacy in general - is questionable, it may be expected that the procedures and expectations are poorly understood. Once the results of the genetic testing, there is additional consideration for what should be done with the newly acquired information. There are plenty of parents and familial units who may not only completely understand what the results mean in terms of expectations for development of their child into adulthood, but what kind of financial, emotional, and psychosocial considerations to expect throughout the process. Even the most educated and financially stable parents may have difficulty fathoming how their life could potentially change with the expected outcome of the pregnancy, as exposed by the genetic tests.
Ethics and Legality
Advancements in genetic testing have created opportunities to determine whether individuals are at risk for certain diseases (Van den Veyver 2016). Genetic tests can be marketed by the healthcare industry as being essential to care when that may not be an accurate representation.
Legal concerns exist for physicians who fear litigation when a child is born with a genetic disorder after prenatal genetic testing. Most malpractice cases concerning prenatal tests focus on negligence on the part of the healthcare provider's not giving pertinent information related to the testing and/or not discussing associated risks. In the article, “Rare prenatal testing case raises ethical questions,” a couple was assured that their baby did not have a chromosomal defect, yet the baby was born with Down Syndrome. The parents filed a lawsuit in the circuit court asking for expenses to raise a child with Down syndrome. The parents claimed that they would have aborted the child had they known the child was going to have a chromosomal birth defect.
Prenatal genetic testing may not produce accurate results, posing concern for women in determining whether their fetuses have significant genetic abnormalities. These genetic screenings may increase the likelihood of miscarriages due to the procedure. Further, results obtained from the screenings may lead to major decisions such as termination of pregnancy. There is a potential that human error may lead to misinterpretation and to decisions that are based on false information. According to Mark Bradford, about ninety percent of women terminate their pregnancies when the fetus tests positive for Trisomy 21, thereby reducing the Down syndrome community by as much as thirty percent (Bradford 2015).
There are ethical issues with prenatal genetic testing. Women may be screened believing that their doctors and medical providers are acting in their best interest, but this belief may be questionable as providers earn revenue from administering these tests.
Another concern is that a fee-for-service (FFS) payments could incent overutilization, encouraging testing whose clinical utility is questionable (Emanuel and Fuchs 2008). Though currently discouraged under current U.S. healthcare reform, FFS payment could nonetheless contribute to excessive marketing of medical services. Emanuel and Fuchs tie a consumerist attitude on the part of patients to overutilization of health services in the U.S. Another issue resulting from an initial prenatal screening is the likelihood that a positive result will lead to further tests even though there is often no intervention that is available before birth. Caulfield (2001) calls upon primary care physicians to mediate issues caused by the commercialization of genetic tests. Mikitiuk (2004) warns that patients who may not benefit from certain genetic tests could nonetheless be psychologically affected by the marketing of such tests, e.g., from advertising.
The Stakeholder Framework
Marketers, providers and vendors target pregnant women, who are are the stakeholders. In the Stakeholder framework, unnecessary testing drives up the cost for these pregnant consumers and contributes to physician revenue and the overall cost of care which affects the wider community. This can lead to mistrust in providers, especially when there are adverse outcomes. Ferrell (2011) counts among stakeholders “employees, suppliers, and local communities”, showing that the stakeholder pool can be far-reaching.
Effect of Marketing Processes on Stakeholders
Advertising of prenatal services through television, social media or physician offices may have an influence on stakeholders. Marketing strategies that are effective with expectant mothers include ads that target maternal instincts (May 2017). Sharon Cole (2004) writes, “companies need to start targeting before the baby arrives – when the expectant mother is making her decisions – if they want to get in on this lucrative market”..
Bolstered by marketing, prenatal genetic testing is becoming more mainstream. As little-understood and new prenatal testing procedures are integrated into medicine and practice, there is a “strong potential for ill-informed patient decision-making, unjust distribution of services, and increased stigmatization of disability communities,” (Allyse, Sayres, Havard, King, Greely, Hudgins, Taylor, Norton, Cho, Magnus, and Ormond 2013). *Note about ads in appendix
Recommendations and Conclusion
Per Allyse et al, there are various recommendations for the ethical marketing of medical testing. Genetic screening should be be offered in an honest and transparent fashion to support women in high risk pregnancies. Noninvasive prenatal tests should be offered through qualified clinicians and never directly to consumers. The ordering clinician should provide guidance on appropriate testing and speak with the patient about procedure risks, obtaining informed consent. Test standards should be developed and examined to ensure analytic validity and should be based on clinical evidence. Payments for testing should be based on value, not quantity, as in the current FFS payment model; doctors should not be perversely incentivized to overutilize these tests to gain revenues. Physician practices and health care organizations must develop policies and procedures based on values and expectations for behavior within ethical and legal guidelines.
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